Having a child in the Neonatal Intensive Care Unit (NICU) and facing decisions about life-sustaining treatment can be scary, heartbreaking and overwhelming. Disagreements are not uncommon. Sometimes, doctors recommend treatments and parents refuse. Sometimes, parents request continued treatment doctors think inappropriate. Usually, the dilemma comes down to questions about the value of life with severe physical or cognitive impairments.

The Gray Zone

Treatment for some diseases are clearly beneficial. For instance, more than 90 percent of children born after 30 weeks of gestation will survive and have no long-term problems.

On the flipside, a baby born at 20 weeks will certainly die. No child born that early has ever survived. Treatment of such a baby is futile.

The tough cases are the ones in-between, for whom it’s not clear if treatment is in the best interest of the child or not. Some people call this the gray zone. Doctors could do everything to save the baby’s life and either the baby is going to die anyway, and have a more painful, drawn-out death, or the child could survive with severe disabilities and chronic health problems.

The gray zone is a unique challenge, and it’s important that doctors help parents understand there is a choice, the implications of that choice, and what should be considered to make the best choice for the baby and family.

The New Decision-Making Approach

For many years, the standard practice for physicians was to only provide the facts. By this approach, doctors were encouraged to think of themselves as neutral and objective. The goal was to tell families what the outcome would be with treatment and then ask the parent to make the decision about whether to try to save the baby or whether, instead, to provide only comfort care.

Once the facts were shared, by this view, it would be the parents’ decision on what to do next. Physicians considered this a model of informed consent. Well, it turns out, most parents hate this approach.

First of all, parents of a dying premature baby are not at the peak of rationality and are instead at an emotional vortex where nothing makes sense. Everything the parent had hoped and dreamed has just been shattered. They don't know where they are, what they're doing, how to do it and who to trust. They're not only getting pressure from each other and the doctors, but family members who also are emotionally devastated.

Second, decisions must be made immediately. A premature newborn needs treatment urgently. Third, doctors themselves have biases and are often not the best communicators. Put these all together and it led to dissatisfaction on both sides. Parents felt abandoned and doctors felt parents made impossible demands.

A new approach is developing, by which, doctors help parents discern their own values and ethical commitments as they face an unanticipated situation and life-altering decisions. Instead of giving parents the facts, doctors need to start by acknowledging emotions and help parents understand there is a choice.

Doctors and Parents Working Together

Medical advancements have redefined the way doctors and patients address end-of-life decisions. Things that used to be uniformly fatal are no longer fatal. There is always something more that can be done or tried.

If a ventilator isn’t working, the child can be put on a lung bypass machine. The machine does all the work and the lungs are no longer needed. Dialysis can take over for the kidneys and a left ventricle device can take over the functions of the heart, and there’s always an experimental therapeutic agent that hasn't been tried before. None of this was possible 50 years ago. Knowing how far to push the limits is always tough on families.

Doctors need to think of their own biases and acknowledge personal opinions, but it shouldn’t dominate the discussion. It’s not uncommon for parents to ask the doctor what they would do if faced in a similar situation. While it’s ok to share one’s own belief, it doesn’t mean it’s the right choice for the family. It’s also ok for doctors to admit they don’t know what they would do.

The second step is to acknowledge parents are in a crisis. For many, it’s the worst thing that has ever happened. Doctors need to ask parents to share fears and hopes, and get to know these families better. After that, providers can tiptoe into the idea that a decision needs to be made together.

Good Ethics Start with Good Facts

Good facts are needed to make choices. After that, it comes down to values. The key question is what’s most important to the parent, particularly for their child.

The primary role for almost every parent is to love their child, keep them from harm and to do what’s best for the child’s health. When keeping a child alive becomes less and less likely, the role of the parent changes. Parents get to the point where they say what it means now to be a good parent is to stop the painful, medical interventions that are only causing suffering.

What Parents Need to Know When Facing End-of-Life Situations

Decisions don’t usually need to be made right away. In fact, often, it’s better to start treatment and then see how the baby responds. Like most situations, the assessment made in the first five minutes isn’t as good as the assessment made after 24 hours. Some babies born at 23 weeks will look better after the first day or two of life, in other cases the child’s condition may get worse. If things aren’t going well, then doctors and families together can re-assess the situation and, perhaps, decide to withdraw life-support.

Parents need to take time and talk about their feelings with each other, and the nurses and doctors. Don’t make a decision until if feels right. Parents need to find someone they trust and let that person be their guide.

If treatment doesn’t work, redirect care away from efforts to save the child’s life toward pain relief and comfort. Ask if the hospital has palliative care services. Good palliative care almost guarantees the child will not be in pain or suffer. The family can then gather, practice faith and create a peaceful atmosphere. Sometimes that’s the most loving thing a parent can do for a dying child.

]]>Neonatology,Our StoriesMon, 21 Jan 2019 16:51:41 +0100https://content.presspage.com/uploads/1483/500_nicu-babies194.jpg?10000Influenza: Test or Treat?http://news.childrensmercy.org/influenza-test-or-treat/
http://news.childrensmercy.org/influenza-test-or-treat/According to the CDC, between 9.3 million and 49 million people get sick from the flu each year, and vaccination is the best prevention. Influenza activity often peaks between December and February, but the flu season can last as late as May.

Both the flu and a cold can cause similar respiratory symptoms, but usually those with the flu will also have a fever, chills and a cough. Children may also have a sore throat, runny nose or muscle aches.

Type 2 diabetes is a growing problem for our youth in this country. What was once considered an adult disease is now becoming more prevalent in children ages 10 to 18 years old. The good news is, it is preventable and reversible if it treated appropriately.

What is Type 2 Diabetes?

Type 2 diabetes is when your body doesn’t produce enough insulin to be used properly and blood sugar levels rise higher than normal. If left untreated, excess blood sugar can cause long-term damage to the body including eyes, kidneys and nerves. It also doubles your risk of heart attack and stroke.

Some people have a genetic predisposition to type 2 diabetes, but in most cases it’s related to lifestyle and is usually linked to being overweight.

Puberty and Diabetes Risk

What we’ve seen over the past two decades is more children ages 11 – 15 years old being diagnosed with type 2 diabetes. Children going through puberty are at higher risk than younger children, because they’re going through a growth spurt, they feel hungry all the time and they have regular weight gain during this period. They also start to have hormone changes, which can make their bodies more resistant to insulin.

During this time, it’s more important than ever to make sure your child is making healthy choices when it comes to diet and exercise.

Warning Signs

If your child has abnormal weight gain and has a Body Mass Index (BMI) above 85 percentile they’re at risk. That’s why a yearly wellness check is extremely important. Your pediatrician monitors your child’s weight and checks their BMI during these appointments, which helps pinpoint concerning trends that need to be addressed.

On the flip side, unexpected weight loss is also concerning. Your child should not be losing weight if they’re not trying to. This is a sign of insufficient insulin and the body is burning fat and muscle for energy.

Other warning signs include increased urination and thirst. Nighttime is a good indicator. If your child once slept through the night, but is now frequently getting up to go to the bathroom and drink water you should call your healthcare provider because most likely your child’s blood sugar is too high.

Treating and Preventing Type 2 Diabetes

Modifying lifestyle is the best way to treat Type 2 diabetes and it works most of the time. Sometimes insulin is needed to help bring blood sugar levels down, but it doesn’t mean your child will need to use insulin the rest of their lives.

The first thing you should do is step back and assess the situation. How many beverages containing sugar is your child drinking a day? What does their meal portion size look like? What do they eat for snacks? Are they eating at bedtime? What is their activity level?

Eating healthy and exercising is key to reversing or preventing Type 2 diabetes altogether. Make sure your child is eating plenty of vegetables, while reducing the potion size of carbohydrates (which increases blood sugar) and beverages containing sugar. Your child should also get at least an hour of physical activity a day and limit screen time.

Start with Small Changes

I often hear eating healthy is expensive, but write down all money you’re spending on soda and chips, and you’ll be surprised! Instead of buying junk foods, sweets and sugary drinks, use that money to buy vegetables, protein and good fats. Also, the next time you go out to eat, order water instead of soda and it’ll save you a couple dollars per family member. Eating healthy is doable and affordable when you’re spending money on food that is good for your body.

I know making lifestyle changes can be overwhelming, so start small. Focus on two-or-three changes at a time and set goals you can obtain. For instance, limit sugary drinks. Walk up-and-down the stairs a couple of times. Stand the next time you’re watching TV instead of sitting on the couch. Every little thing helps.

Also, know the entire family needs to be committed to these changes. You can’t eat pizza and drink soda for dinner, and expect your child to eat carrots and peas. Everyone has to work together to be healthy, but don’t give up. Even if you take two steps forward and one step back, that’s ok. It takes work, so don’t lose hope. It’s never too late to make changes!

Fever is the body's natural response to illness or infection, and it's important for parents to know that fever is not known to endanger a generally healthy child.

The reason we treat a fever is because we want the child to be comfortable. When kids are comfortable they tend to drink better, have increased activity and are less irritable. Parents should focus on signs of improvements, instead of the exact degree of the temperature.

Over-the-Counter Medications

Children can be treated with either acetaminophen or ibuprofen. Ibuprofen can be used for kids six months of age and older. Acetaminophen can be used for younger infants, but if a child is less than three months of age and has a fever, contact the child's primary pediatrician before using acetaminophen.

Choose the medication the child responds to best and stick with it. Don't alternate between acetaminophen and ibuprofen. Also, keep track of when you give the medication, so the next dose isn't given too soon.

When to Contact the Doctor

So when should parents contact the child's primary pediatrician because of a fever? Here's some examples of when I think it would be a good idea.

If the child is less than three months of age (as mentioned above).

The child doesn't seem to be improving with management at home.

The child is not able to tolerate liquids or has signs of dehydration, such as decrease in wet diapers or dry mouth.

]]>Health & Nutrition,Our StoriesTue, 08 Jan 2019 20:26:00 +0100https://content.presspage.com/uploads/1483/500_fever-851730.jpg?10000Visitor Restrictions for Inpatient Units begin Dec. 27http://news.childrensmercy.org/visitor-restrictions-for-inpatient-units-begin-dec-27/
http://news.childrensmercy.org/visitor-restrictions-for-inpatient-units-begin-dec-27/Effective Thursday, Dec. 27, visitor restrictions for children 12 years old and younger will go into effect for inpatient units at Children’s Mercy and Children’s Mercy Hospital Kansas due to the community experiencing an increase in respiratory viral illnesses.

This means visitors, including siblings, 12 years old or younger will not be permitted to visit inpatient units.

Respiratory viruses are easily spread to others. For this reason, Children’s Mercy is taking preventative measures to stop the spread of illness and provide a safe environment for patients, visitors and staff members. Signs will be posted.

]]>Our StoriesFri, 21 Dec 2018 19:52:33 +0100https://content.presspage.com/uploads/1483/500_adele-hall-campus-2.jpg?10000Constipation: A Parent’s Guide to Prevention and Treatment http://news.childrensmercy.org/constipation-a-parents-guide-to-prevention-and-treatment/
http://news.childrensmercy.org/constipation-a-parents-guide-to-prevention-and-treatment/Constipation is a very common problem for many children. Between 12-14 percent of kids have chronic issues with constipation, which is defined as a decrease in the frequency of bowel movements or the passage of painful bowel movements.

We asked Kacie Kaufman, APRN and director of the BRICK (Bowel Retraining in Constipated Kids) clinic, about the common myths and facts of constipation.

Constipation is almost always caused by a medical condition.

False: Most constipation is functional in nature which means there is no identifiable medical cause. Often kids begin withholding stool because of pain or for social reasons such as school. It is very uncommon for there to be an organic cause of a child’s constipation such as colon disease or a neurological problem. In children, constipation can begin when there is a change in the diet, during toilet training or following an illness. Often kids don’t like using toilets outside of home so they withhold stool till they get back home. Stool withholding is a very common trigger for constipation. A diet low in fiber and fluids and some medications can also contribute to constipation.

Chronic constipation only happens to toddlers.

False: Constipation can occur at any age. It is especially common in preschool aged children who are being toilet trained and in school-aged children. Children at these ages are more prone to stool withholding due to avoidance of the toilet leading to painful bowel movements.

There are several symptoms parents should be aware of.

True: There are a variety of symptoms associated with constipation. People think constipation means that a person goes days without passing a bowel movement, but there are also other symptoms that parents need to be aware of. Symptoms such as a history of passing large sized stools that may or may not clog the toilet, fecal soiling, abdominal pain and withholding behaviors such as stiffening legs or hiding in the corner can be associated with constipation.

Older aged children are typically more private about their bathroom habits, so these kids often don’t get diagnosed until other symptoms occur such as fecal soiling or abdominal pain.

A child can be constipated even if they’re going poop every day.

True: Yes, this is definitely true. Constipation is not only determined by how often the child passes a bowel movement, but also by the volume or amount of the bowel movement and the consistency of it. If the child only passes a pea size bowel movement once a day, then he or she is constipated.

Parents should do their best to monitor a child’s bathroom habits to find out if the child is having any trouble going poop, especially when they reach school age and older. Keeping a stool journal can be a helpful way of tracking bowel movements.

Over-the-counter laxatives are safe to use.

True: Over-the-counter laxatives are safe to give children. MiraLAX is commonly the first line treatment many health care providers recommend because it is a powder that is easy to administer in a drink of choice. It is colorless, tasteless and is well-tolerated for long periods of time without children becoming dependent on it. MiraLAX and other stool softeners work by pulling water into the stool to keep it soft and easy to pass.

Constipated kids will find relief after going poop once.

False: Treatment of constipation is often a process and takes several months or more to improve. The first step in treatment is to do a bowel clean out and remove as much poop as possible from the colon. A clean out should create lots of loose stool. After clean out, a daily maintenance dose of a stool softener/laxative is given daily to prevent the build-up of stool again. The goal with daily medication is to help the child pass soft daily stools and decrease withholding behaviors. It takes times for the colon to return to its normal shape and muscle tone.

Bowel retraining is an important part of treating constipation.

True: Overtime the rectum gets stretched out from retained stool and there is loss of sensation and lack of communication from the gut to the brain. The normal urge to stool is lost, so kids can go several days without passing a poop. Scheduled bathroom breaks after meals are a good way to retrain the bowel. Children should sit on the toilet for about five minutes and relax to see if they can go. Using a foot stool can be very helpful when sitting on the toilet as well. By getting kids on the toilet daily and treating their constipation effectively, kids will regain the urge to stool.

Positive reinforcement and rewards can be very helpful with bowel training. Offer kids a small reward or treat such as a piece of candy or electronic time immediately after completing a toilet sit.

Constipation is fixable.

True: Constipation is definitely fixable but it takes a commitment from both patients and parents. Often kids are taking medication daily for many months or longer to keep stools soft and regular.

I recommend kids visit their pediatrician and try over-the-counter remedies first for constipation. The child may need to try a couple of different medications before they find relief. If symptoms persist, than a referral to the GI clinic can be made.

In the BRICK clinic, we obtain a detailed history of the child, perform a physical exam and provide a detailed plan of care that includes education about constipation, medication used to treat it, dietary recommendations and behavioral interventions.

Learn more about the BRICK clinic at Children’s Mercy, which was developed to provide children with severe, chronic constipation a comprehensive program to improve their bowel function.

When your kiddo is sick or injured and your pediatrician’s office is closed, urgent care can help bridge the gap until you can follow up with your primary doctor.

Urgent cares are designed to save unnecessary trips to the Emergency Room (ER), and are easy to access, have shorter wait times and cost less than an ER visit. (Children with serious or life-threatening injuries or illnesses should be taken directly to theERor call 911.)

However, not all urgent cares are created equal. Here are the benefits of taking your child to a pediatric urgent care instead of a general urgent care.

The Pediatric Specialists

Pediatric specialists only work with children. Most providers of general urgent care are not pediatric specialists. Because the intent of a general urgent care center is to offer care for people of all ages, the doctors and other providers there are typically trained in family or emergency medicine. These specialties allow for only a few months of pediatric training rather than the 3 years for a pediatrician. The care approach to illness and injury for an adult doesn’t always translate well to children.

General urgent cares also accommodate wellness types of exams, which include immunizations, school and sports physicals, as well as chronic disease management. Pediatric urgent cares intentionally don’t provide these types of exams, because anything that has to do with a chronic illness or wellness issue should be handled by the child’s primary pediatrician or medical home.

Expertise in Pediatric Injuries

Kids are not small adults, and the treatment and care that’s appropriate for an adult, doesn’t always work for a five-year-old. Pediatric urgent care doctors and nurse practitioners really understand the mechanisms of pediatric injury and how these often differ from an adult injury. Children have growing bones, with unique areas likely to be injured according to their stage of development.

Medication Dosing for Kids

Another benefit of a pediatric urgent care is pediatric dosing of medication, choice of medication and appropriate use of antibiotics.

Pediatric specialists understand the unique effects of certain medications including adverse effects most likely to happen in children, especially in young children and their developing brains. Another pediatric subtlety of prescribing medication is to make sure it’s not only effective, but also is one likely to be tolerated by the child.

Counseling parents about the use of over-the-counter cough and cold preparations is just as important. We discuss what therapies parents should be using, for how long, and what side effects they need to be aware of when giving a child the medication.

Kid-Size Care

Exam rooms in pediatric urgent cares are outfitted with smaller equipment designed specifically for kids, which includes temperature probes, blood pressure cuffs and scales. Everything is scaled to allow us to examine a teeny-tiny baby all the way up to an older adolescent.

If a child needs a boot, splint or sling – all sizes are available and can even be adjusted down to baby sizes. Image gently guidelines are followed, which means the child receives up to 80 percent less radiation during an x-ray.

Pediatric urgent care staff are trained in child life techniques to help reduce stress and worry that comes with being sick or injured. This allows for us to do those sometimes difficult things, such as collecting blood, in a child-friendly way.

The other thing that’s important is keeping families together and not separating kids from their parents when they’re acutely ill or injured, when kids and parents are often scared. We also incorporate the child in the visit to the degree they can interact.

Kid-Friendly Atmosphere

Not only are pediatric urgent cares kid-sized, they’re kid-friendly. From the colorful artwork on the walls, to the toys that help keep the kiddos distracted, to the reading material in the waiting rooms and patient rooms, everything is kid-appropriate.

We also keep plenty of kid-friendly snacks, prizes and stickers on hand to help make the visit easier for children. No parent ever expects to end up at urgent care and our hope is to help make the day of a sick or injured kid a little better.

]]>Health & Nutrition,Our StoriesWed, 19 Dec 2018 15:47:37 +0100https://content.presspage.com/uploads/1483/500_urgent-care-2018-15-770932.jpg?10000Rare Diseases: On the Verge of Diagnosis http://news.childrensmercy.org/rare-diseases-on-the-verge-of-diagnosis/
http://news.childrensmercy.org/rare-diseases-on-the-verge-of-diagnosis/Rare diseases are individually very rare, but collectively they're not rare at all, with one in 10 children diagnosed with a rare disease. New disease-gene assertions are being made at a stunning rate, with around 40 new genes discovered each month. This work is possible through genomic sequencing, where the DNA code is read for each patient and checked for variants, which are akin to spelling mistakes.

Many of these new disease-gene assertions are through the identification of de novo variants, which means the variant is not present in either parent. Such variants are interesting because they rarely occur and often tend to be pathogenic. However, if they are found in a new gene not yet associated with human disease, additional patients and other evidence is needed to assert a gene-disease relationship.

Researchers at Children’s Mercy studied 21 new de novo variants in genes of unknown significance. We spoke with Carol Saunders, PhD, Clinical Director (pictured right), and Isabelle Thiffault, PhD, Director of Translational Genetics, at the Center for Pediatric Genomic Medicine (pictured left), about how this research could lead to better understanding of rare diseases.

What prompted you to conduct the study?

Dr. Saunders: We had a growing list of patients with interesting variants in new genes that had insufficient evidence linking them to disease in humans. This means we didn’t have enough data to classify the variant as pathogenic and we couldn’t just call it benign. Without further evidence, these patients and families are left without a diagnosis.

In hopes of finding answers, we shared information on patients with de novo variants in 21 new genes with researchers around the world to find more such cases. It takes more than one patient to establish a gene-disease relationship - more evidence and more replicates are needed to make genetic diagnosis.

Why are these genes significant?

Dr. Thiffault: The problem is trying to prove that they are significant—we don’t always know. Many of these conditions are so rare that only a couple of people worldwide have the same particular disease—the aim is to find them!

Why is it important to collaborate with your peers around the world?

Dr. Saunders: One way we find additional patients with variants in our gene of interest is through an online matchmaking service that connects us to other researchers with similar patients. Sometimes it takes a while to get a match with a patient that a variant in the same gene, but it’s these collaborations that lead to publishing new gene-disease associations and will ultimately give us the confidence to say this is diagnostic for a particular patient. We have ongoing research collaborations with colleagues in Italy, Netherlands, Canada, Australia, France, Belgium and the UK.

Knowing that a gene is associated with a certain condition helps us understand the biology of humans, which may eventually lead to treatment or a cure.

How do you decide if a gene is linked to a disease?

Dr. Thiffault: As part of our study, we used a new scoring tool to assess the level of evidence for each gene-disease association. This incorporates case-level genetic data, functional studies, animal models which all together helps us determine if there’s strong enough evidence for a gene-disease association. Having enough well-phenotyped patients with variants in a gene of interest is a necessary part of this—you can’t just rely on animal modeling.

We’re the first to publish this exercise for curating new genes with de novo variants identified through clinical testing, which we hope becomes the new model. We really view it as a community service and if everybody would share their case level data and variant curation, researchers and clinical labs would have so much more information and be able to provide accurate reporting for patients with rare disease.

We intend to repeat this exercise with a whole new list of ~100 genes. These findings not only provide patients with answers, but allows families to network with others affected by the same new genes.

Do other organizations share their data?

Dr. Saunders: Some do and some don’t. We are one of a handful of clinical laboratories that share the interpretation of every clinically curated variant from our laboratory with a database called ClinVar, which other laboratories can freely access to see our interpretation. We get questions every week from people around the world trying to interpret variants in their own patients, and this exchange of information is extremely useful. If our interpretation disagrees with another lab, we work to resolve the issue. We find out what data we each have and how we came to the conclusion, so we can get the right data out there.

What is bench-to-bedside research and why is it important?

Dr. Saunders: Bench-to-bedside research is when results from our lab are directly used to develop new ways to treat patients in our hospital.

We’ve identified numerous treatable conditions in the lab. In some cases it's identifying a vitamin a child may be missing which can be absolutely life-saving. This would not be possible if we didn't have the kind of tools we have in our lab. These capabilities will continue to grow as we adopt new tools that can look at different types of variants in the genome. Translating that into clinical testing and what that means for patients is really important. We’re helping change the course of people’s lives for the better.

What is your hope for the next 10 years?

Dr. Thiffault: We have a limited understanding of the genome right now. Even though we can sequence the whole genome for the most part, we’re only looking at two percent of gene sequences. There's about 8,000 genetic diseases, yet we don’t know what genes go with half of these cases and within each gene there's thousands of potential variances.

I hope we really have a good understanding of the rest of the genome we don’t understand to be able to provide answers to more patients and families.

What is the biggest takeaway for parents?

Dr. Saunders: I want parents to know the rate of new disease gene discovery is astonishing and just because they don’t have an answer now, doesn’t mean it’s the end of the road. New genes and new information will lead to better understanding of rare diseases.

Over the course of our year-long study, at least half of the genes moved from limited evidence to strong or moderate evidence, which led to a diagnosis. So, it’s important to reevaluate things every year if you don't have any answers yet. We’re always working on new research and new testing that will be meaningful for our patients and their families.

They say dogs are man's best friend, but at Children's Mercy Hospital, Hunter the service dog is everyone's best friend.

Taylia Vannicola lights up when Hunter walks her way. The golden retriever is a bright spot for the little girl diagnosed with leukemia and going through her second round of chemo treatments.

Hunter received special training in Atlanta and was specifically chosen for this position at Children's Mercy. Now, he makes the rounds five days a week, wearing a special vest and visiting as many as 10 patients a day.

He's especially tired after playing with little Taylia. Thankfully, her doctors believe her treatments are working and she'll be in remission soon. Until then, at least one more round of chemo -- with Hunter by her side.

]]>In The News,Our StoriesFri, 14 Dec 2018 22:51:58 +0100https://content.presspage.com/uploads/1483/500_therapydogs-5-947120.jpg?10000A NICU Reunion 12 Years in the Makinghttp://news.childrensmercy.org/a-nicu-reunion-12-years-in-the-making/
http://news.childrensmercy.org/a-nicu-reunion-12-years-in-the-making/Ansley Ross in the NICU (left) and standing by the NICU room named in honor of her support for Children's Mercy (right).

Ansley Ross has no memory of her seven weeks at Children’s Mercy. This is because she was a newborn brought to Children’s Mercy in an ambulance soon after her birth at Overland Park Regional Medical Center. But Ansley’s parents, Stan and Merett, remember it all too vividly.

Ansley was diagnosed with Gastroschisis during an ultrasound while still in utero. Following the diagnosis, Stan and Merett met with a team to coordinate Ansley’s delivery and immediate transfer to Children’s Mercy for the mandatory surgery needed within six hours of her birth.

Twelve years later, Ansley thinks frequently about the stories she’s heard about how she came into the world and her seven weeks in the NICU. She uses what she knows to bring awareness and support to the NICU that helped her overcome her own health challenges and grow into the confident pre-teen she is today.

“Ansley began asking more questions about age five when she did not like her belly button which is larger and different from ours. We always told her it was very special because the surgeons made it especially for her! Thus began her increased curiosity, interest and frequent comments about wanting to help other kids at Children's Mercy,” Merett says.

Ansley and her dad, Stan, at the Digital Ally Open golf tournament (left) and presenting the $30,000 check to Children's Mercy (right).

During the summer of 2017, Ansley single-handedly raised $30,000 at the Digital Ally Open, a web.com and PGA-sanctioned golf tournament held annually at Lionsgate. Ansley sold hats signed by local celebrities to tournament attendees.The money Ansley raised was donated to the NICU at Children’s Mercy.

Recently, Ansley and her mother returned to Children’s Mercy to take a special tour of the NICU where they were unexpectedly reunited with Sarah English, a nurse who was a vital part of Ansley’s care twelve years prior. (pictured right.)

“We had wonderful nurses and developed a special bond/friendship with Sarah in the seven weeks Ansley was in the NICU,” Merett says. The Rosses attended Sarah’s wedding, but eventually lost touch with her. They thought of her frequently through the years, but didn’t know how to find her. Meeting her again was a surprise and pleasure.

Sarah English has been a nurse at Children’s Mercy for 15 years. Sarah says she always knew that she wanted to be a NICU nurse, but that she had no idea about how rewarding and fulfilling the job would actually be.

“One of the rewards of taking care of critically ill newborns is when you are given the opportunity to see how they are doing years down the road. I cared for Ansley Ross and was her primary nurse in ICN for several weeks. She recently visited the ICN and had raised money to donate to the hospital. I was thrilled to see the beautiful, intelligent and giving person she has become,” Sarah says.

In honor of Ansley’s support of Children’s Mercy, a room in the NICU has been named ‘The Ansley Ross Room in Celebration of Little Bits of Good’. According to Ansley, Little Bits of Good means “you don’t have to do a big thing to make a difference. Even if I didn’t get to do something that big, I can do lots of little things to add up and help others.”

Recurrent C Diff infections are often caused by antibiotic use. Dr. Alka Goyal, of the Children's Mercy Gastroenterology Division, explained that intestines contain both “good” and “bad” bacteria. Use of antibiotics can disrupt the delicate balance between the two.

FMT restores that balance by transplanting screened and filtered fecal matter, or stool, from a healthy donor into the small intestine of a recipient.

“Patients may get C Diff if they receive antibiotics to treat, for example, ear, throat or urinary tract infections or pneumonia,” Dr. Goyal said. “Sometimes you can just stop the antibiotics and the infection will go away, but in the last 20 years more virulent strains of C Diff have developed that don’t settle down just by withdrawing the antibiotics.”

Continued antibiotic use keeps killing off bacteria (good and bad), and the body becomes unable to retain a healthy balance.

“We know that about one in four patients who gets a C Diff infection has a recurrence, and if there is one recurrence, a second or third infection becomes more likely,” Dr. Goyal said. “C Diff has been treated with antibiotics for a long time, but emerging literature and studies show that fecal transplant is far more effective. By doing a single fecal transplant, 80 to 85 percent of patients can be cured of recurrent C Diff.” Cure rates are even higher on second transplants: “I would not say it’s a 100 percent cure, but it is about as close to 100 percent as it can get.”

Dr. Goyal and a multidisciplinary team that included Medical Informatics & Telemedicine, Nursing Documentation, Pharmacy, the GI procedure room, Same Day Surgery, Strategic Planning and OR personnel established the FMT program.

Success story: Jayden Wood

One of Dr. Goyal’s first fecal transplant patients was 10-year-old Jayden Wood, a fourth-grader at Bell Prairie Elementary School in Kansas City, Missouri, who has managed Crohn’s disease since age 3 and had experienced recurrent CDIF for over a year before his procedure in February 2018.

“Jayden had severe diarrhea and stomach pain,” Dr. Goyal said. “Every time we checked his stool it was positive for CDIF. He got relief when we treated him with antibiotics, but when we stopped them, ‘Boom!’ the symptoms came back. We were worried that his Crohn’s disease was worsening, but the symptoms were actually because the CDIF wasn’t getting out of his system.”

Jayden’s father, Jason, said Jayden was missing school an average of three days a week, sometimes more. An avid baseball and hockey player, Jayden’s participation in those sports also was affected.

“He would have seven or eight stools a day, and it’s not easy to manage school if you have to go that many times,” Dr. Goyal said.

Jayden was one of the cases Dr. Goyal used to push for establishment of a fecal transplant program at Children's Mercy. When she proposed the procedure to the Woods the family (especially Jayden’s mother, Melissa, a nurse practitioner), did background research and decided to proceed.

“After our first meeting with Dr. Goyal, we realized we had an advocate, and for a doctor to be an advocate for your child is crucial,” Jason said.

Jayden’s procedure was performed on a Friday, and within hours success was obvious.

“By the following Sunday, we could see a dramatic change,” Jason said. “He was up and moving around, was lively, had more energy, and wasn’t in pain. That was pretty amazing, and he has yet to complain about stomach pain. We thought it would work, but we didn’t know it would work this well.”

Dr. Goyal said Jayden’s compliance was a significant factor in his successful treatment.“I’d have to say, Jayden is a real superstar,” she said. “I told him to make some changes in his diet, and he didn’t flinch…his attitude was, ‘If this is going to make my health better, that’s what I’m going to do.’ I’m proud of him. He’s a good kid!”

Jayden’s father said, “Dr. Goyal is quite strict, and that’s a good thing. We appreciate it, both from a parent’s side and a patient’s side.”

Jayden said he feels great, and his advice for other children who are candidates for fecal transplant is, “Don’t be nervous!”

Procedure Candidates

Fecal transplantation is not available to patients younger than 1.5 years, but all other ages served by Children's Mercy are eligible (unless they are on ventilators, have a central line or are at a high risk of complications). It is an outpatient procedure that does not require a hospital stay.

“It is a very safe procedure that is more cost-effective than continued use of antibiotics,” Dr. Goyal said. “Most insurance companies agree that fecal transplant is the right way to treat recurrent C Diff, and patient satisfaction is very high because they’re in and out of the hospital and don’t have to go through a lot of pain and discomfort.” Side effects may include abdominal cramps, bloating, gassiness and nausea, but those are uncommon and not severe.

Transplantation can be done by the lower route (colonoscopy) or by the upper route (a tube that goes into the nose, to the stomach and sometimes into the upper part of the small intestine). The patient is treated with antibiotics and bowel cleanout to decrease the bacterial load before the procedure so that the healthy stool can colonize easily.

The transplanted stool has been pre-screened to ensure no infections are present. The chosen donors are very healthy individuals who can also be family members. Since screening for various infections is expensive, Children's Mercy uses fecal suspensions prepared by a stool bank, which is a more economical option.

Currently fecal transplant is available only for recurrent C Diff infections, but health professionals see potential for treating inflammatory bowel diseases like Ulcerative Colitis and Crohn’s Disease.

Research Study

In fact, Dr. Goyal is preparing a research study on the feasibility of using fecal transplantation for Crohn’s Disease, and children like Jayden who continue to be sick despite not having C.Diff will be included in the study. “There is a growing interest in expanding this promising therapeutic approach, and it is exciting that Children’s Mercy has chosen to invest in this research.”

]]>Our Experts,Our StoriesThu, 13 Dec 2018 21:55:40 +0100https://content.presspage.com/uploads/1483/500_goyalandjayden002-906999.jpg?10000Handwashing: 5 Simple Steps to Keep you Germ-Freehttp://news.childrensmercy.org/handwashing-5-simple-steps-to-keep-you-germ-free/
http://news.childrensmercy.org/handwashing-5-simple-steps-to-keep-you-germ-free/Handwashing is like a “do-it-yourself” vaccine that stops the spread of germs. In fact, regular handwashing, is one of the best ways to keep from getting sick. Here are the five simple and effective handwashing steps:

Wet hands with water.

Lather with soap and make sure to cover the entire surface of your hands.

]]>Health & Nutrition,Our StoriesThu, 13 Dec 2018 14:59:00 +0100https://content.presspage.com/uploads/1483/500_germ.jpg?10000When to go: Emergency Room vs. Urgent Carehttp://news.childrensmercy.org/when-to-go-emergency-room-vs-urgent-care/
http://news.childrensmercy.org/when-to-go-emergency-room-vs-urgent-care/It’s the dilemma every parent faces at some point when their child needs medical care, but the doctor’s office is closed. Do you go to the Emergency Room (ER) or Urgent Care?

If your child has a life-threatening illness or injury, call 911. But not every situation is so clear-cut. If your child breaks a bone, has a high fever or an asthma attack, what should you do? We’ve put together this chart to help you determine where to take your child for immediate treatment.

Emergency Room

Urgent Care

Asthma attack (severe)

Allergies

Bleeding that won't stop

Asthma attack (minor)

Broken bone (looks bent, curved or deformed)

Broken bone (not bent)

Burn (severe)

Bronchiolitis

Cast problems (soiled or wet)

Burn (minor)

Cut (severe)

Cold or cough

Fainting

Cut (minor)

Fever (infant less than 2 months old)

Dehydration

Head injury (loss of consciousness or extreme impact)

Diarrhea

Headache (migraine)

Dizziness

Pneumonia (diagnosed and with worsening symptoms)

Earache and ear infection

Poisoning

Fever (children over 2 months old)

Seizure

Headache

Stomach pain (severe)

Head injury (no loss of consciousness, minor impact)

Swallowed object

Insect or minor dog bite

Trouble breathing

Nausea, vomiting

Ultrasound, CT scan or MRI

Pink eye

Rash

Sore throat

Sprain or strain

Stitches (from minor cut)

Stomach pain (mild)

Urinary infection

Children’s Mercy Urgent Care “Save My Spot”

If you determine the best place to take your child is Urgent Care, you no longer have to sit in the waiting room. Children’s Mercy recently launched “Save My Spot” at its three Urgent Care locations throughout the Kansas City area.

The online check-in program allows patients to view current wait times and choose an arrival time that works for them. This allows sick or injured kids to stay at home while waiting.

Here’s how it works:

Families check for the current estimated wait time.

Select a convenient location or waiting time.

Reserve a check-in time.

Fill out a short form.

Receive text reminders when their check-in time is near.

Whether you take your child to Urgent Care or the ER, it's best to look for a health care system that is focused on pediatrics and is staffed by board-certified pediatricians and pediatric nurse practitioners.

Don’t let the head-bending multisyllabic words – atomic absorption spectrophotometry, ultra-high performance liquid chromatography, hematofluorometer, mass spectrometry – get in the way of what you really need to know about Children’s Mercy’s Toxicology Lab, and why it is a genuine point of pride.

Instead, know that what began 50 years ago with one chemist, little more than a couple of crude instruments and handwritten data with carbon-paper copies, is today the only full-service clinical and metabolic toxicology laboratory in the region, expanding as well into biochemical genetics, and playing a crucial, life-saving role in patient care at CM and beyond.

Where other hospitals have auto-analyzers that screen only 10 to 12 of the most common drugs, the Children's Mercy Toxicology Lab has 15 support staff and analysts who know how to use the state-of-the-art instrumentation. They can accomplish everything from drug screens on toddlers who’ve gotten into parents’ pill bottles, to checks on patients’ lead and Vitamin D levels, to metabolic tests that answer questions about a baby’s failure to thrive.

“We are the only clinical laboratory in the area that performs comprehensive drug screening and metabolic testing to help in the diagnosis and treatment of overdoses, poisonings and patients with metabolic disorders,” said Uttam Garg, PhD., DABCC, FABFT, FAACC, Division Director of Laboratory Medicine.

“We help fill in the blanks and solve the mystery,” added Clint Frazee, NRCC (CC,TC), MBA, who’s been the lab’s Clinical Supervisor since 2002. “The investment in advanced instrumentation allows us to perform very sensitive and specific testing for the presence and concentration of drugs that many other hospitals are unable to do.”

And they can do it quickly.

“Rapid diagnoses can be a matter of life or death for children,” Dr. Garg said, adding that even in less existential circumstances, the toxicology talent and technology at CM making early diagnosis possible can reduce the length and cost of a child’s hospital stay.

That was then…It’s a far cry from 1968, when the late Vernon Green, PhD, a professor of pharmacology at the University of Missouri Kansas City, was recruited to establish a toxicology consulting service and laboratory at Children's Mercy. Even with just one chemist and meager equipment, it broke ground as one of just a few such services in the country, publishing articles in medical journals and developing a computerized poison control center which later became the basis for similar resources nationwide.

“Early on, assessing lead levels was one of our toxicology laboratory’s primary activities,” Clint said. “Leaded gasoline was still in use in the 1970s and lead paint exposure was more common. In fact, Kansas City is still considered a ‘hot spot’ for higher risk of lead poisoning because of the potential for leaded paint in older homes.”

Toni Sheffer (pictured left), MBA, MT(ASCP), CSSGB, now Administrative Director of Lab Services, joined Children's Mercy in 1981, and remembers a time before computers, when data was hand-written with carbon copies – one set each for the patient chart, the lab files and the billing department. When she became computer supervisor in 1988, Children's Mercy’s computer system filled a room on the top floor of what is now the Annex building on the Adele Hall Campus, where she hauled large disks storing lab data that required daily change.

By the early 1990s, when Toxicological Biochemical Analysts Mike Kiscoan, NRCC-TC, and Jeff Knoblauch, NRCC-TC, joined Children's Mercy, the lab staff had grown to six employees plus a director. Mike and Jeff are the longest-tenured chemists in the Toxicology Lab, and have experienced growth in its volume of work (“at least 10 times,” they estimate) and stature as advances in research and instrumentation have made it possible to solve increasingly complex mysteries with ever-greater precision.

This is now…Clinical toxicology remains the core of the Children's Mercy Toxicology Lab. But with today’s state-of-the-art technology and the expertise of the lab’s 15 chemists, biologists, medical technicians and support staff, their work has expanded into biochemical genetics – the study of inborn errors of metabolism that can cause a range of birth defects and metabolic disorders.

A sampling of the work they now undertake for Children's Mercy patients as well as patients and clients throughout the region:

Comprehensive clinical and forensic drug screen testing (including blood and urine tests for the Kansas City, Missouri, Police Department, and other police departments in the Kansas City area).

Meconium drug screens, to assess maternal drug use.

Organic acid, amino acid and acylcarnitine profiles as follow-up to abnormal newborn screening– Children's Mercy’s lab is one of four designated centers in Missouri for confirmation of abnormal results in statewide newborn testing.

Following kiddos born with phenylketonuria (PKU) with a home sample collection kit, developed by the toxicology team, that allows routine monitoring without requiring parents to bring the child to the hospital for blood draw.

Detect organic aciduria such as methylmalonic and propionic acidemia, amino acid and fatty acid oxidation disorder – all of which (and more) fall under the heading of determining why a baby is not developing as it should.

And continue to publish when the opportunity presents itself. “The lab has now published more than 100 articles!” Dr. Garg said.

Their work is labor-intensive, but the investment of time and talent pay off in precision. “We don’t just spin samples,” Mike said. “It’s true chemistry.”

“Our work can affect people’s quality of life,” Jeff added, noting that even when it’s not a life or death situation, their findings can influence insurance and parental custody decisions as well as diagnoses and treatment.

Looking ahead The pace of change only accelerates. New equipment, new genetic discoveries and new treatments all require the Children's Mercy Toxicology and Biochemical Genetics Lab to stay several steps ahead.

“The designer drug market is huge,” Clint said, offering just one example. “There are so many compounds now, and as soon as one is identified and legally controlled, a smart chemist modifies the chemical structure to make a similar non-controlled drug. Keeping on top of that is challenging.”

But because Children's Mercy is the only clinical laboratory in the area to have the latest technology enabling quick identification and specific measurement of a broad range of compounds, it’s a challenge they can meet, Dr. Garg said.

“We’re proud of our laboratory, its history and the services we are able to provide our patients here at Children's Mercy and throughout the region.”

]]>Research & Innovation,Our StoriesFri, 30 Nov 2018 16:47:20 +0100https://content.presspage.com/uploads/1483/500_toxicologygroup3-798726.jpg?10000Lessons Learned: How Saving Babies in Africa Could Improve U.S. Health Care http://news.childrensmercy.org/lessons-learned-how-saving-babies-in-africa-could-improve-us-health-care/
http://news.childrensmercy.org/lessons-learned-how-saving-babies-in-africa-could-improve-us-health-care/Saturday, Dec. 1, is World AIDS Day and the results of a 5-year HIV research study in Kenya could big global impact on all of health care – not just AIDS, but cancer and other chronic illnesses.

On average, 14,000 infants are exposed to HIV yearly in Kenya and early diagnosis is critical to the child’s survival. Medications need to be started by 12 weeks of age. Without early intervention, most babies will die within the first year of life.

The biggest barrier has been tracking and testing mother-infant pairs in a timely fashion. Brad Gautney, President of Global Health Innovations developed the HIV Infant Tracking System (HITSystem) with partners at OnTarget, a Kansas City based Digital

Marketing Agency, to link providers, laboratory technicians, and mothers and babies through a cloud-based tracking system.

Dr. Kathy Goggin (pictured left), deputy director of the Children’s Research Institute at Children’s Mercy, in collaboration with Dr. Sarah Finocchario-Kessler (pictured right), the study lead and associate professor in the Department of Family Medicine at The University of Kansas Medical Center, evaluated the HITSystem to determine if it could indeed improve outcomes. The

team from Kansas City partnered with the Kenya Medical Research Institute (KEMRI) to conduct this research. They discuss the results of their study and how the technology could be adapted and used for other health care issues that impact us all.

What prompted you to conduct the study?

Dr. Finocchario-Kessler: Maternal health and social justice have always been passions of mine and too many children were dying from exposure to HIV that didn’t need to die.

When a woman is HIV-positive and gets pregnant she needs to start antiretroviral therapy (ART) and stay on medication throughout the entire pregnancy to prevent mother-to-child HIV transmission. The mother also needs to continue anti-HIV medication after the child is delivered to prevent passing the virus through breastfeeding, which is recommended in developing countries.

The child must also be tested several times from six weeks of age through the first 18 months of life or while the mother is breastfeeding. If at any time the child tests positive for HIV, medications need to be started immediately, which can reduce mortality by 76 percent.

Kenya had a paper-based management system in place to track and test mother-infant pairs, but the system had many gaps.

Dr. Goggin: There were simply too many gaps in care that prevented life-saving treatment from being started. The quality and efficiency of early infant diagnosis (EID) services were hampered by system and structural barriers, which included long turnaround times for test results to be returned to the hospital and communicated to mothers.

For instance, a mother would be told to come back in a couple of months to receive the test results. She would take a taxi or bus and make the often multiple hour commute back to the hospital only to find the results weren’t ready yet. So she’d come back again the next month and the results still weren’t available. After a few times of traveling back-and-forth, she’d finally give up and never return.

The study was designed to rigorously evaluate the HITSystem technology, and determine if infant testing services could be improved and lives could be saved. We had pilot data showing the impact was significant, but we needed to prove that in a more robust clustered randomized controlled trial for the Ministry of Health to take it on.

How does the HITSystem work?

Dr. Goggin: Instead of a paper-based tracking system, which was the standard practice of care in Kenya, the HITSystem uses available technology and text messages to improve communication and accountability between provider, laboratories and mothers. When a mother-infant pair presents for EID care, a digital record is created. Lab results are entered online making them immediately available to providers at the hospitals instead of being couriered back-and-forth, and the mother receives an automated text message when the results are available.

When we enroll a mother, we also ask her to draw a map to her house, so if she doesn’t have a mobile phone or doesn’t respond to the text message a community healthcare worker can locate her to make sure follow-up care is continued.

Dr. Finocchario-Kessler: The system really provides an at-a-glance view of the entire cascade of care and everything that needs to happen. Did the doctor get a sample from the baby to test for HIV? Did the lab results get returned to the hospital? Did the mother get notified that the test results were in? Was lifesaving ART initiated if the test was positive? Was the baby retested at 9 and 18-months of age? Every step is checked off in the system as it happens and the doctor is alerted when a phase hasn’t been completed. Providers can also easily check a dashboard to find out which children need attention, so they can act on it.

To the best of our knowledge, this was the first cluster-randomized trial of an intervention using a combination of text messages and internet technology to target both clinical and laboratory outcomes across the complete 18-month EID cascade.

What were the results of the study?

Dr. Goggin: Six government hospitals participated in the five-year study. Three of the hospitals used the HITSystem, while the others used the standard paper-based tracking system. We found that HIV-exposed infants enrolled in the HITSystem received more efficient EID services compared to those receiving standard care. Lab results were received more than two weeks faster, mothers were notified of the results more than a week faster and HIV-positive infants started life-saving medications nearly two months earlier than those receiving standard care. In fact, 100 percent of the eligible HIV-positive infant enrolled in the HITSystem were initiated on ART.

Dr. Finocchario-Kessler: Providers and mothers who used the system tell us it greatly improved the quality of care. Mothers especially appreciated the benefit of expedited test results and receiving text messages when it was time to return with their infant for results or additional tests. Not only did it help conserve limited resources and wasted trips to the health facility, but the quicker results meant decreased anxiety as they waited to learn their child’s HIV status.

Because of the results of the study, the HITSystem is now the recommended system for Kenya and more than 124,000 mother-infant pairs have been enrolled in Kenya, Tanzania, Malawi and Nigeria.

What are other ways the HITSystem is being used in Kenya?

Dr. Finocchario-Kessler: Based on requests from providers and hospital administrators in Kenya, we’ve already adapted the HITSystem to support HIV-positive women during their pregnancies. The technology is being used to encourage pregnant women to attend all appointments, adhere to HIV medications daily and give birth in a hospital to help prevent HIV transmission to the child.

Next, we’re looking to adapt the HITSystem to support cervical cancer screenings for reproductive-aged women, given the incredibly low rates of screening and early treatment that can dramatically reduce preventable deaths from this disease.

Cervical cancer not only effects HIV-positive women, but all women in general. Where Kenya is right now in terms of being able to address the cancer epidemic is where they were 10 years ago trying to address HIV. Providers don't have the training or the physical infrastructure in place for diagnostics and treatment. We want to apply what we’ve learned and adapt the HITSystem for cervical cancer screening and treatment that allows us to really help build global health.

Dr. Goggin: Unlike the U.S., PAP smears aren’t common practice in developing areas. When a woman is diagnosed with cervical cancer it’s usually at a very advanced stage when little can be done. A lot of young girls are at risk and there’s a ton of work to be done to normalize cervical cancer screening in Kenya, but the HITSystem could be used to notify women and let them know they need to get an exam.

Dr. Finocchario-Kessler: What we also want to do is implement a system in the schools and look at all eligible students who need to receive the HPV vaccine, but haven’t yet. HPV vaccine management could also be used here in the states, which would prompt providers to reach out to patients who have yet to receive the vaccine or still need to receive the second dose.

How else could the HITSystem technology be applied to other areas of health care?

Dr. Goggin: Think about how this system could be used for vaccine adherence. Wouldn’t it be great if before a child arrived at the doctor’s office the parent received basic information about the vaccines the child will be receiving that day? If a patient doesn’t show up for the well-visit, the doctor would be alerted to follow-up and let the parent know there are important vaccines the child needs.

The technology could also be used to help monitor other chronic illness, such as cardio-vascular disease and diabetes. Eventually, data from a diabetic’s glucometer and insulin pump could be directly communicated to the doctor’s office so the patient and provider could visit remotely and immediately schedule an appointment when levels aren’t looking good. It’s this proactive care versus reactive care that will help improve patient outcomes.

We’ve learned so much through this study and the HITSystem could be transferred to a ton of stuff we’re doing in the states, especially when it comes to linking providers and patients in rural communities through technology.

Dr. Finocchario-Kessler: The system helps translate best practices and guidelines, and proactively closes that gap in what we know should happen and what actually happens. I think there’s a lot we can do with this technology and it has such transferability to other diseases and health outcomes.

Dr. Goggin: In the end, the HITSystem really holds everyone accountable, the provider, the system and the patient. I'd love to see platforms like this designed for areas of health care where we really aren't delivering on the promise of what it could and should be.

Improving health care means changing behaviors and shifting broken paradigms. Developing amazing treatments won’t have any impact on outcomes if it stays in a bottle. Its true potential will only be realized if we have a system that gets the treatment to the right person at the right time, which will take work and likely smart technological solutions like the HITSystem. It will also take clinicians, health services and other researchers all working together toward one common goal.

Most likely you know someone who has celiac disease, whether it’s a family member, a friend or your child’s classmate. Celiac disease is actually quite common. Roughly 1 in 133 people have celiac disease, but more than half of all people with celiac disease are undiagnosed. The number of undiagnosed celiac cases is improving as doctors and patients learn more about the symptoms of celiac disease.

What is Celiac Disease

Celiac disease is an autoimmune disease, which is triggered when gluten is ingested in certain people that carry genetic risk factors. Once the immune system recognizes gluten as a problem, it attacks the lining of the intestines. It's not just feeling sick or having a stomachache when eating gluten, it actually causes damage to the small intestine responsible for absorbing nutrients from food. When damaged, the body can't absorb nutrients it needs to grow and a child can become malnourished.

No one is born with celiac disease. It can develop at any time in a person’s life, but childhood is the most common time to start showing signs of celiac disease.

Symptoms

Symptoms vary from person-to-person. Some people may not have any GI symptoms at all, while others are very ill. It really is different for everyone.

Classic GI symptoms include chronic abdominal pain, nausea, vomiting, diarrhea or constipation. Many children with celiac disease also have a hard time growing or gaining weight.

There can be many symptoms of celiac disease outside the GI tract as well, which includes headache, fatigue, joint pain and skin rash.

Celiac disease is more common in children with type 1 diabetes, thyroid disease, Down syndrome, Turners syndrome and those with a family history of celiac disease.

Diagnosis and Testing

If you are worried you or your child has celiac disease, it is important to discuss your concerns with your primary care doctor. A simple blood test (Tissue Transglutaminase tTG-IgA) is the first step in evaluating for celiac disease, but this test needs to be done when a child is still eating gluten. If the blood test comes back positive, then a consult with a gastroenterologist and an upper endoscopy with biopsy of the small intestine is needed to confirm the diagnosis. A biopsy of the small intestine is still the best way to be sure about the diagnosis of celiac disease as the blood tests can sometimes give false positive results.

The longer someone is untreated the more likely that person is going to have another autoimmune condition, such as Type 1 diabetes or thyroid issues. Uncontrolled symptoms can also cause nutritional deficiencies, iron deficiencies and osteoporosis.

If someone in the family has been diagnosed with the disease it’s important for all other siblings to start being tested every 2 or 3 years even if they don’t have symptoms as the genes that put them at risk for celiac disease are passed through families.

There are two genetic markers called HLA-DQ2 and HLA-DQ8 that make a person predisposed to celiac disease. However, just because a person carries one of these markers doesn't mean they will have celiac disease, it just means they’re at risk. If siblings test negative for these markers, then they are very unlikely to ever develop celiac disease and will not need repeated testing.

Treating Celiac Disease

The mainstay treatment for celiac disease is a strict gluten-free diet, which helps manage symptoms and promotes intestinal healing. The good news is damage to the lining of the intestines is reversible after eating gluten-free for 6-12 months, but to stay healthy the diet must be followed for a lifetime.

Meeting with a dietitian that has experience with the gluten free diet to treat celiac disease is essential. Individuals with celiac disease need to avoid all traces of gluten, down to the very last crumb. It’s also important to make sure kids are getting enough vitamins, minerals and healthy nutrition in their new diet.

When to go on a gluten-free diet

If you’re concerned your child has celiac disease, it’s important to see a specialist before starting a gluten-free diet. There’s a couple of reasons we recommend this approach. First, while removing gluten may be enough to help the child feel better, the child hasn’t been properly tested, which is necessary to confirm if the child has an autoimmune disease or another medical condition that mirrors celiac disease.

Second, if a child has not been properly diagnosed, that child probably isn’t adhering to the diet as strictly as they should. It’s not unusual for families to go halfway gluten-free at home or only gluten-free when the child isn’t feeling well. This can cause the immune system to stay active and increase the risk of autoimmune or nutritional issues down the road.

Eating gluten-free

Eating gluten-free is becoming more and more mainstream, and it’s getting easier to find gluten-free foods at the grocery store and menu items at restaurants. However, even with all these changes it’s still a daily challenge to eat gluten-free.

Home

It’s much easier to eat gluten-free at home than anywhere else because the family can control what food is in the house and how the child is being exposed to gluten. Take peanut butter for example. Someone with celiac disease needs a separate jar, because if a knife is used to spread peanut butter on bread and then put back in the jar – the peanut butter is now contaminated with gluten.

We encourage our families to look at a celiac diagnosis as an invitation back into the kitchen. It is a chance to start preparing fresh, healthy foods for the whole family.

Some families will choose to get most of the gluten out of the house or only make gluten-free meals, so the home becomes a safe place for the kids to eat all the time. For family members that don’t have celiac disease, there’s nothing wrong with eating gluten-free. It’s not an unhealthy way to eat as long as it’s a balanced diet.

School and Social Gatherings

There has been some resistance because gluten-free has become trendy, so parents need to be strong advocates for their child in the school setting to make sure the child is staying safe. We encourage parents to be vocal, and help educate the child’s classroom and families.

For other social outings, it’s best to bring your own gluten-free treats to parties to avoid potential mix-ups and gluten-free dishes to any potluck. Bringing a special gluten free treat will guarantee your child has something safe to eat but still feels included in the celebration.

Restaurants

Restaurants are trying to offer gluten-free options, but the food isn't always prepared correctly. Some restaurants are still cross-contaminating food whether it’s because employees are not changing gloves, food is fried in shared oil or gluten-free noodles are being cooked in the same water as the regular noodles. Ask in advance how the food is prepped and cooked.

Follow-Up Care

Follow-up care is essential. Kids need to see a specialist who is well-versed with celiac disease at least once a year to make sure the child is growing and to monitor celiac blood tests and vitamin deficiencies. It’s also important to meet with a dietician to make sure nutrition is on track.

]]>Health & Nutrition,Our StoriesWed, 28 Nov 2018 15:57:01 +0100https://content.presspage.com/uploads/1483/500_glutenfree-362847.jpg?10000Common Colorectal Conditions: Diagnosis, Treatment and Long-term Carehttp://news.childrensmercy.org/common-colorectal-conditions-diagnosis-treatment-and-long-term-care/
http://news.childrensmercy.org/common-colorectal-conditions-diagnosis-treatment-and-long-term-care/Most colorectal conditions are a result of differences that occur during development before a baby is born. Some of the most common colorectal conditions include: anorectal malformation/ imperforate anus, Hirschsprung disease, cloaca and severe functional constipation/colonic dysmotility. Anorectal malformation,when the child’s anal opening and the rectum do not exit through the sphincter complex while Hirschsprung disease causes blockage of the intestine based on lack of nerves in the bowel. Both of these developmental issues impacts 1 in 5,000 babies. Cloaca,a malformation in females where the rectum, vagina, and urinary tract are fused together, creating a single common channel, which affects 1 in 50,000 girls.

Children’s Mercy is home toone of a very few comprehensive colorectal centers in the nation. We spoke with Dr. Rebecca Rentea, director of the Comprehensive Colorectal Center, and Dr. John Rosen, gastroenterologist, about the importance of patients having a long-term, comprehensive care plan to achieve the best outcome.

What can parents expect after learning their child has a colorectal condition?

Dr. Rentea: A colorectal disorder diagnosis can be a great source of stress for patients and families. While a Cloacal malformation can in certain situations, be diagnosed prenatally, other conditions aren’t discovered until after an infant is born. For many parents, diagnosis such as imperforate anus and Hirschsprung disease are surprise diagnoses, which can be scary, devastating and overwhelming.

Most children will undergo surgery in the first few days of life to provide some type of stability, but it’s only a temporary fix. Additional surgeries may be needed throughout childhood and there are also other associated anomalies that may not be life-threatening or prominently featured at birth, but still need to be addressed.

Upon inpatient diagnosis, families will meet the entire care team, which includes a pediatric, fellowship-trained colorectal surgeon, gastroenterologist, urologists, gynecologists, psychologist, clinic coordinator and nurse practitioner. Together we build a long-term follow up plan for the patient and determine a plan that will best benefit the child.

Why is a team-based approach important for patients?

Dr. Rentea: The team-based approach is really important because colorectal conditions are associated with several different systems of the body. We engage families early because we want to provide one place where they can get the diagnosis, treatment, management and support of care throughout childhood.

Dr. Rosen: While a newborn predominately has surgical issues in the first few weeks of life and wouldn’t necessarily need a GI specialist, the entire team is part of the care plan from the beginning. We get to know the child and the family, so as the child gets older and more medical and psychosocial issues arise we can address those issues early on. We’re not meeting the child for the first time at 12 or 13 years old. We already know the child’s medical history and have been part of the shared plan.

As specialists, we also bring different perspectives to the table. Diseases affecting the colon can also affect the entire intestine. Kids may have trouble swallowing, with stomach emptying, and with nutrition. A GI doctor can help identify and treat these problems in the context of their primary surgical disorder. It’s not just surgical intervention the child needs, but an entire holistic view of the child’s overall health.

Whatare some of the other hurdles these kids face later on in life?

Dr. Rentea: One of the first milestone a family faces with their child is toilet training. The other potential hurdles are around puberty, sexual development and childbearing age. For instance, parents may wonder if their daughter born with a cloaca anomaly or without a vagina can give birth to her own child in the future. These are issues that we can provide information that we can discuss early on when meeting families and revisit again as we hit different developmental milestones. We provide support to patients and families at all times throughout their journey.

Dr. Rosen: Another great support system we have is a pediatric psychologist dedicated to the center to help patients and families deal with issues associated with medical disease, such as the stressors of surgical healing or going through adolescence.

There’s three prongs to treating colorectal conditions. You have surgical management, medical management and there's always a behavioral component of the management, and the psychologist is able to help families get from point A to point B.

Dr. Rentea: Our philosophy is these are real medical issues and not "emotional" problems. It's a whole new light when parents know they’re supported by an entire team’s expertise.

What are the other benefits of having a comprehensive colorectal center?

Dr. Rosen: Kids with complex colorectal conditions can be treated, but they’re not cured and will need long-term care. When patients visit us in the clinic they’ll see 5-6 providers in one day, so it saves families from making multiple trips to the hospital.

Dr. Rentea: We take great efforts to arrange imaging, tests, and labs to coordinate with scheduled clinic appointments. This allows all providers to go through the child’s entire medical history before that child arrives, so we can offer the best care. It really speaks volumes to the amount of work that is being done and our families leave the appointments with a real assessment and plan.

Whenever possible, we provide all surgical procedures necessary in one surgery. This reduces the risk of complication, recovery time and improves overall quality of life.

What new cutting-edge technology is available to help kids with colorectal conditions?

Dr. Rosen: We’re one of only a few centers that performs colonic motility testing to determine how the colon is or isn’t working. The test works by placing a tube with tiny holes in the colon and pushing water through the tube at a constant rate. When the colon pushes back on the water it sends a wave down the tube, which gets converted to a digital signal. Those digital patterns indicates to us if the colon is squeezing, the strength of the squeeze, and if the squeezes are disordered or going the wrong direction.

While colonic motility testing doesn’t fix the problem, it does tell us more about prognosis and what to expect. Having this information available is a huge asset, and helps us determine if medications are being maximized and/or what type of procedure could be performed to help the child’s colon.

Dr. Rentea: Understanding the latest evidence and management of patients with complex colorectal conditions is important. While the diagnosis may not have changed, the management and surgical decision making has come a long way! Additionally, more research in understanding the outcomes and quality of life of children who have undergone surgical procedures is more important than ever in making decisions for care.

What do you want families to know about complex colorectal conditions?

Dr. Rosen: We know pooping issues can be stressful for kids and families, but new technology, medication and surgical techniques can help make things better.

Dr. Rentea: A child is not going to feel optimally engaged in life if there is anything physiologically or anatomically wrong, so when you identify the issue, validate the issue and do something about it – that’s incredible. My passion has always been pediatrics and I feel grateful to be part of the care for these children and we’re really here to help provide a road map to life.

Nephrology Social Workers Cristina Hernandez, LCSW, LMSW and Kelli Scott, LCSW, LMSW, share an office in the kidney dialysis unit, and soon they also will share the distinction of winning a national award that has become something of a tradition for Nephrology social workers at Children’s Mercy.

Cristina recently was named the recipient of the National Kidney Foundation’s (NKF) 2019 Award for Social Work in a Pediatric Setting. Kelli won the NKF award last year, making it two years in a row for Children’s Mercy and the fourth time in history that a Children's Mercy Nephrology social worker has won the award. Bradley Warady, MD, Division Director-Pediatric Nephrology and Director of Dialysis and Transplantation, said it is unprecedented for the same hospital to win this prestigious NKF national award two years in a row, and four times total.

Nephrology Social Workers Kelli Scott (left) and Cristina Hernandez (right) won back-to-back "Awards for Social Work in a Pediatric Setting" from the National Kidney Foundation, making Children's Mercy the only institution to win the national award two years in an row and four times total.

Indispensable

“Cristina and Kelli are indispensable members of our dialysis and transplant team,” Dr. Warady said. “The fact that they are back-to-back recipients of the NKF award not only highlights their exceptional performance, but it also emphasizes how lucky we are to have them both at Children’s Mercy.”

Cristina will receive the award at the NKF 2019 spring meeting in Boston; Kelli was honored at the NKF’s 2018 spring meeting in Austin, Texas. Cristina was on hand for Kelli’s big day, and Kelli will be in Boston to cheer for her colleague and office-mate next spring in Boston.

Kelli and Cristina both provide social work services for dialysis and kidney transplant patients. They work closely with this patient population to provide ongoing psychosocial assessment and care coordination. Every day is a bit different for them: this often includes providing emotional support to the patient and families as they adjust to their diagnosis and start down the transplant path, which often includes dialysis. They work to connect patients with resources that may be able to benefit them. They provide in-depth education, ongoing support and advocacy related to many topics, including medication adherence, care planning and advance directives to name a few. Kelli and Cristina also work closely with patients and their families to ensure educational needs are being met and insurance issues are addressed. They are integral members of the medical team, so communication with the medical team is a key component of the work they do.

Both Cristina and Kelli attribute the success of nephrology social work at Children's Mercy to the support of the Nephology program and medical team.

“Our Children’s Mercy Nephrology program really values social work, and I don’t know that every Nephrology program has that,” Kelli said. “We get the opportunity to participate fully in the patient’s care, and our opinions are valued. I think they value our perspective and our advocacy for our patients because it’s helping them achieve their medical goals.”

Helping families adjust

Cristina said, “I would echo that; just to be valued, to be looked to as an expert in our field, helping families adjust to kidney disease. I think the medical staff appreciates that we remind them that this is more than a dialysis patient or kidney transplant patient…they have other stressors in their lives, and kidney disease is just one component of who they are.”

Those stressors, Kelli said, are often related to the fact that, “Many of our patients often don’t come from psychosocially stable families. Our families have so many other stressors in their lives that they’re just trying to work through daily, and then you add in dialysis or a transplant, it can be extremely difficult to manage.”

Life-changing disease

“It’s a difficult and invasive disease to adjust to, and incredibly life-changing,” Cristina said. “With dialysis, you could be here 14 hours a week, and when you add in all the other appointments involved, it’s almost like a part-time job; these kids are also going to school, may have a real part-time job and other family obligations. Getting their medical needs met involves a lot of complications and adversity to overcome.”

Kelli added, “And it’s often hard for patients to realize that transplant is just a treatment, not a cure; they’re most likely going to have to require another transplant in their life. So it’s not necessarily the end of dialysis.”

Cristina, who has been at Children’s Mercy for four years, has witnessed kidney disease first-hand in her family; her mother was a dialysis patient.“My mom was on dialysis, so this kind of work always had a special tug on my heart,” Cristina said. “I’ve been lucky in that having a family member on dialysis, I can see the other piece of it. It really helped me understand the journey a patient with kidney disease goes through. I was a child welfare social worker before I came here, and I’ve just always had a passion to work with kids and their families.”

Kelli, who has been at Children's Mercy for six years, has a cousin who had a kidney transplant, but she said that didn’t influence her decision to enter the field. She began her career in the mental health area, then became interested in obtaining her master’s degree in social work. She started in the GI Clinic at Children's Mercy, then moved to Nephrology social work when the opportunity arose.

“I enjoy working with families on an ongoing basis, and I just really like working with this population,” Kelli said. “I see myself being in this position for a long time.”

Congratulations to Cristina and Kelli for continuing a tradition of excellence at Children’s Mercy!

]]>Nephrology,Our StoriesTue, 13 Nov 2018 20:09:49 +0100https://content.presspage.com/uploads/1483/500_nephrologysocialworkers009-495853.jpg?100004 Things You Need to Know about Antibiotics http://news.childrensmercy.org/4-things-you-need-to-know-about-antibiotics/
http://news.childrensmercy.org/4-things-you-need-to-know-about-antibiotics/When a child has a cold, sore throat or a virus, it usually means a trip to the doctor’s office or urgent care. As parents, we expect the provider to write a prescription for an antibiotic to help our child feel better as quickly as possible, but antibiotics aren’t always needed. According to the CDC, at least 47 million antibiotic prescriptions each year are unnecessary.

Any time antibiotics are used they can cause side effects and lead to antibiotic resistance. Children’s Mercy is committed to using antibiotics appropriately, and we have a dedicated antibiotic stewardship team that works with the medical team to evaluate and optimize antibiotic therapy seven days a week.

Here are four facts you should know to be antibiotics aware:

Antibiotics aren’t always the answer

Antibiotics do not work on viruses, such as colds and flu, or runny noses, even if the mucus is thick, yellow or green.

Antibiotics are only needed for treating certain infections caused by bacteria and won’t help some common bacterial infections, which includes most cases of bronchitis, many sinus infections and some ear infections.

Antibiotics will not make you feel better if you have a virus

Respiratory viruses usually go away in a week or two without treatment. Ask your healthcare professional about the best way to help your child feel better while their body fights off the virus.

Taking antibiotics creates resistant bacteria

Antibiotic resistance occurs when bacteria no longer respond to the drugs designed to kill them. According to the CDC, antibiotic resistance is one of the biggest public health challenges of our time. Each year in the U.S., at least 2 million people get an antibiotic-resistant infection, and at least 23,000 people die.

Antibiotics saves lives

When a child needs an antibiotic, the benefits outweigh the risks of side effects or antibiotic resistance. Children should take the antibiotic exactly as prescribed and talk with your doctor if your child develop any side effects, especially diarrhea, since that could be a sign of an infection, which needs to be treated.

]]>Child Development & Safety,Our StoriesMon, 12 Nov 2018 15:43:38 +0100https://content.presspage.com/uploads/1483/500_the-suppliers-of-the-nfls-painkiller-addiction-1417700204.jpg?10000NICU Reunion a Great Successhttp://news.childrensmercy.org/nicu-reunion-a-great-success/
http://news.childrensmercy.org/nicu-reunion-a-great-success/More than 700 people attended the NICU Reunion this year held Saturday, Oct. 27 at the Kansas City Zoo. It was a great opportunity for families to connect with Children's Mercy staff. Lunch was served and there were educational activities for the kids throughout the zoo. In addition, it was Boo at the Zoo so families could dress in costume and go trick or treating.

Many of the families expressed their appreciation at the event and commented on how meaningful it is to be able to see the Children's Mercy team again. “It was so much fun,” said Abbie Richardson, former NICU mom. “Since we were in the NICU for so long it was so nice to see everyone and that everyone remembered the kids. It’s great to see everyone when life isn’t as stressful as it was when we all first met.”

Having the opportunity to reconnect with patients and families is also very important to the Children's Mercy team that is why they host this event to bring families and staff together.

“It was wonderful to see our former patients, dressed in costumes, growing and thriving,” said Steven Olsen, MD, Associate Division Director, Neonatology. “It was also touching to see our ICN nurses and ancillary support providers, who work so closely with the families, tear up when they met former patients. Some former NICU patients were running around and others continued to need medical support, but all showed the resilience that we love to see as our patients overcome their trials.”

This is a Children's Mercy tradition that continues to grow with more and more families attending. “It was so special to us to see our nurses and our NICU neighbor,” said Morgan Comfort, former NICU mom. “It’s great to see how much the babies have all grown!”

The warmth and mutual admiration could be felt throughout the event and there were many teary eyed reunions.

“It was so good for my heart and soul to see the babies we’ve worked so hard with flourish and being happy now,” said occupational therapist Mich Hardy. “When we work with them so early on you just never know how it’s going to turn out and it’s amazing to see them now. The families were so appreciative and wonderful to visit with.”

The next NICU Reunion will be held in 2019 and we are already excited about what that day will bring. Special thanks to our donors and volunteer staff who helped make a great day for the families.

Nearly 250,000 children are seriously burned and need medical attention in the U.S. every year.

I’ve been an APRN for more than 18 years and the most common childhood burns hasn’t changed over the 15 years I’ve worked in the burn unit. Here’s a look at the trends and how to prevent injury.

Scalds

The number one burn we treat is scalds from spilled food and beverages, and most of the injuries happen while the child is using the microwave. We often care for 8-10 year olds who’ve been burned while pulling ramen noodles (or other hot liquid items) out of the microwave, which is often located above the range. Kids will stand directly under the microwave, on their tip toes and reach up to grab the food. When it’s too hot to hold, they drop it and it splatters down their face, chest and arms. To prevent these injuries, supervise children that aren’t tall enough to reach microwaves up high.

Younger children tend to get scalded when they pull hot items off the stove or countertop. When cooking, use the back burner and turn pot handles away from the edge. Also, keep crockpots away from the edge of the counter and avoid plugging crockpots into the side of the island. Children have been injured grabbing the crockpot or getting caught on the cord and pulling it down on their head, which causes significant burns.

Grease burns are the most common way teenagers are burned in the kitchen. The teenager will be frying food and the grease gets too hot and can splatter or it can ignite. Not wanting the kitchen to catch fire, the teenager will grab the pan and try to take it outside and is burned in the process. The best thing to do is clean up grease spills right away and smother a pan grease fire with the lid. (Do not grab the pan or try to put out the fire with water.)

The bathtub is another place where young kids can easily get scalded. Set the hot water heater to less than a 125 degrees to prevent burns.

Contact Burns

A contact burn is when a child is burned touching a hot object. We always see an increase in fireplace glass burns the first week of November after families turn on the fireplace for the first time during the fall season. Fireplace glass can reach temperatures in excess of 200 degrees Fahrenheit and toddlers just learning to walk can fall into the glass and burn their hands within seconds.

Another place to watch out for is the kitchen. Little kids will crawl over and touch the hot oven door when it’s open, while other kids will reach up and touch the hot stovetop burner. Some parents and grandparents will also set children on the counter to help with cooking and the child will crawl or walk across the hot stovetop. The best prevention is keeping kids out of the kitchen when cooking on the stovetop or opening the oven door.

Other contact burns we treat are caused by clothing iron and curling irons. Keep these items far out of reach of young hands.

Seasonal Burns

You can tell what time of year it is by the acute burns we treat. Now that it’s getting colder, we’ll see fireplace, space heater and fire pit burns. When using a fireplace, make sure to use a screen that covers the entire opening and the fireplace glass. Use kid-friendly space heaters that can be kept cool enough not to burn fingers and hands, even on the hottest setting. Supervise children around fire pits and remember that even when the fire has been extinguished hours earlier the coals are still hot. Hot steam vaporizers are another hazard that can cause steam burns.

In the summertime, we see sunburns, burn injuries from fireworks, and burns from the mufflers on ATVs and golf carts.

Treating Burns

If a child is burned, soak the burn in cool/room temperature water, but do not use ice. Ice will sting and can cause the burn to worsen. After flushing the burned area for a few minutes, cover the area with a sterile non-adhesive bandage or clean cloth to protect the burn from friction and pressure. Over-the-counter medications like Motrin or Tylenol can be given to children (if they’re old enough) to help relieve the pain. Ibuprofen should not be given to children under 6 months of age. Consider using an OTC topical antibiotic ointment for burned area. Minor burns will usually heal without further treatment.

If the burn is more severe, take the child to the Emergency Department immediately. Always remove the diaper in young children that have been scalded. Diapers are meant to be absorbent and can retain heat from scalding liquids. Do not remove burnt clothes unless they easily come off. Cover burns with clean cloth or a dry clean sheet, but do not cover the wound with ointment or pop blisters.

After the Burn

It’s important to protect new skin after a burn has healed. Be careful not to bump or scratch the healed burned area, because new skin can easily be damaged.

Keep the area protected from sun exposure as much as possible and use sunscreen of at least SPF 30 and reapply every 2 hours when outside. The new skin can be easily burn.

Apply fragrance free lotion several times a day and as needed throughout the day. Use a little pressure to massage the lotion in small circular motions until the cream is blended into the skin. This should be done several times each day to help soften and flatten scar tissue.

Learn more about Burn and Trauma Care at Children’s Mercy, the only designated Level 1 Pediatric Trauma Center and the only burn unit devoted exclusively to pediatric patients between St. Louis and Denver.

]]>Child Development & Safety,Our StoriesFri, 02 Nov 2018 18:53:00 +0100https://content.presspage.com/uploads/1483/500_burndangers-782316.jpg?10000How a “Gentle” helping hand helps our imaging experts care for your kidshttp://news.childrensmercy.org/how-a-gentle-helping-hand-helps-our-imaging-experts-care-for-your-kids/
http://news.childrensmercy.org/how-a-gentle-helping-hand-helps-our-imaging-experts-care-for-your-kids/Halloween seemed like the perfect day to treat you to information we’ve been sharing with area providers about the importance of pediatric-specific imaging.

With 24 pediatric-trained, board-certified radiologists, and specialized staff, our Children's Mercy team is focused solely on kids — from infants to young adults. Our experience performing more than 180,000 procedures each year helps us deliver superior diagnostic information. Here’s how:

We “child size” to reduce radiation up to 80 percent compared to adult facilities by using Image Gently® and our pediatric-specific protocols. Protocols are based on the child’s size and weight, and we consider the body part to be imaged (thickness and tissue composition).

]]>Our Stories,Child Development & SafetyWed, 31 Oct 2018 21:25:07 +0100https://content.presspage.com/uploads/1483/500_20181031halloweenradiologysocial-th-372445.jpg?10000Children's Mercy resident 'Grandma' rocks!http://news.childrensmercy.org/childrens-mercy-resident-grandma-rocks/
http://news.childrensmercy.org/childrens-mercy-resident-grandma-rocks/Volunteer Lois Lakey, aka Grandma Lois, has held what is perhaps the most highly coveted volunteer position at any children’s hospital for 20 years. For 20 to 30 hours every week, Grandma Lois can be found sitting in a chair in the Children’s Mercy NICU with a critically ill newborn in her lap.

When families have a baby in the NICU, they sometimes aren’t able to be at the bedside night and day. That’s where Lois comes in, offering comfort, support and a lullaby or two.

Although Grandma Lois focuses mostly on caring for babies, she’s made a marked difference in the lives of people from across the hospital, including parents. She has gone above and beyond her role, also bringing clothes to the hospital for families.

Lois Lakey, aka "Grandma Lois," is a legendary volunteer at Children's Mercy, rocking babies and comforting families in the NICU for 20 years.

“I try to be the best I can be with these babies. But, it’s not only with the babies I try to share. The parents, they need love too,” she says.

Grandma Lois, who turns 83 on Oct. 31, has been selected for the inaugural class of The Shepherd Center's "70 over 70" Awards, and will be honored at a luncheon on Oct. 30.

For all these reasons and more, Grandma Lois was nominated and selected for a special award. She is a member of the inaugural class of The Shepherd Center’s 70 Over 70 Awards. The Shepherd Center is an organization that empowers volunteers to help enhance the lives of other older adults through learning opportunities and service to the community. The 70 Over 70 celebration recognizes 70 individuals from a variety of backgrounds who inspire others and improve our community.

'This is the spot'

As of Oct. 17, 2018, Grandma Lois has amassed a staggering 26,590 volunteer hours. Even after 20 years, she still remembers how she got the job. When she first became a volunteer, she was led around the hospital to see what spots were available. “We came to the NICU and a baby was crying and the nurse was busy. I said this is the spot,” Lois says.

“There is hardly anyone here who doesn’t know who Grandma is, from housekeeping to the medical staff. Her work is appreciated by so many in the NICU. Her smiles, positive attitude, love, compassion and humor make Children’s Mercy not just a better place for the critically ill babies she holds, but for everyone around her as well,” says Shelly Nicoll, Office Manager, Volunteer & Guest Services.

A countless number of babies have been held and comforted by Grandma Lois over the years, but she loves each one and she sometimes receives pictures and updates from former NICU patients. If she could share one piece of advice with every baby, Grandma Lois says she would tell them, “I love you. Be the best thing you can be in this world.”

Grandma Lois will be honored at a special luncheon for the 70 Over 70 on Oct. 30, perfect timing as her 83rd birthday is Oct. 31.

While we don't currently have volunteer openings in the NICU, there are plenty of other ways you can give back! Learn how you can Get Involved at Children's Mercy.

The countdown is on until Halloween, but before your kids head out to trick-or-treat here are some lesser-known safety tips to help keep your ghosts and goblins safe.

Don’t worry so much about the candy

Parents spend so much time worrying if the candy is safe to eat, when they should be thinking about the big picture. Don’t get me wrong, parents should inspect the candy. But they should be more concerned about making sure kids are crossing the street safely.

On average, twice as many children are hit and killed while walking on Halloween compared to any other day of the year. Kids are running door-to-door, darting across the street, laughing with their friends (all while amped up on sugar) and they’re not paying attention.

Any child under the age of 12 should cross the street with an adult, and don’t forget to watch out for cars pulling in or out of driveways too.

Plan your route

Plan your trick-or-treat route in advance, and decide on a route that has the fewest street crossings and is well-lit. Make this a fun activity you can work on together leading up to Halloween. It’s also a good time to remind your child they should walk on the sidewalk or a path, avoid running through yards, and cross the street at the corner or crosswalk. If a neighborhood doesn’t have sidewalks, walk in the road facing traffic and stay as far left as possible.

Having a route isn’t just for younger kids. Children 12 years and older can trick-or-treat on their own according to the American Academy of Pediatrics, but make sure you know who they’re with and where they’re going. That way you know the path they’re supposed to be on if there’s any concern about how long they’ve been gone.

Light up the night

Make sure your trick-or-treater is visible. Only 18 percent of parents put reflective devices on their child’s costumes and there are several, easy things you can do to make sure drivers see them.

First, look for reflective costumes. If you can’t find one or make your own, put reflective tape on the arms, legs, torso and back of the costume. Don’t forget to use reflective tape on the trick-or-treat bag too.

Have kids carry glow sticks and/or a bright flashlight to help them see and be seen. (Make sure to carry an extra flashlight or batteries if trick-or-treating for more than a couple of hours in the dark.)

To make sure kids can see properly, use face paint instead of masks, eye patches, or hoods that may obscure vision.

Use your headlights

A lot of parents drive their kids to neighborhoods to trick-or-treat. Parents tend to think they can drive just like they would drive any other day, but the fact is kids are not paying attention. Kids have one thing on their mind, and it’s having fun and getting lots of candy.

If you’re driving, slow down and be vigilant at crosswalks. Also, don’t forget to turn on your headlights at dusk. Drivers will turn headlights off when pulling into a neighborhood so they don’t blind trick-or-treaters, but this is absolutely the wrong thing to do. You need to be as visible as possible.

Kids also need to know drivers are not paying attention. They’re watching their own kids going door-to-door and not the kid running across the street in front of them. Teach your child to make eye contact with the driver before crossing in front of them.

Trick-or-treating for different age groups

Many children start trick-or-treating when they begin to walk-and-talk. Get the little kids out early when it’s still light out, so they can easily see where they’re going and before the older kids are out wearing scary costumes.

Another option is to take toddlers to a neighborhood shopping center where local businesses are handing out candy. A lot of churches also host trunk-or-treats. These events are a good way for young children to gain experience trick-or-treating in a safe environment.

For school-aged kids, parents should absolutely go up to the door with children until third grade. Number one, the child is going to be nervous interacting with a stranger and all they want is candy. Second, they haven’t developed common sense safety skill yet. If you have older kids, stand back and watch, but always be within earshot of what is being said and done.

Remind children, especially those without adult supervision, not to approach dark houses and stay together in groups. Going in groups is not only fun, it’s safer.

Earlier today, I was fortunate to speak with Congress about Tourette syndrome, and discuss the importance of awareness and how to improve patient access to quality clinical care. The Tourette Association of America (TAA) invited me, and several of my colleagues around the country, to attend the briefing in Washington, D.C. to help shine a light on the neurological disorder that causes individuals to make sounds and movements – tics – that they can’t control.

Lack of Recognition

One of the big issues I shared with Congress was the lack of recognition of how common it is for a child to have Tourette. I started child neurology training in 2003 and at that time it was thought be a rare disorder. We now know Tourette effects one in 100 people, which is as common as epilepsy and almost as common as autism (according to the CDC, one in 59 children are diagnosed with autism), yet there is little awareness of Tourette compared to the other two disorders.

Unfortunately, what most people know about Tourette is how it's been displayed in comedy movies. It’s usually someone with coprolalia, which is when a person uses profanity profusely. The fact is, coprolalia occurs in less than 20 percent of people with Tourette, so a majority of patients will never develop it.

Kids Misdiagnosed

Because of the lack of awareness, a number of children are misdiagnosed. The TAA recently did a survey and found a child waits an average of five years before being diagnosed with Tourette. That’s unacceptable.

There is no test for Tourette, so many times children that snort, sniff or continually clear the throat are treated for allergies instead of tics. When allergy treatment doesn’t work, the child is treated for chronic sinus issues. Some patients will even have a tonsillectomy and adenoids removed, which again doesn’t help because they have Tourette.

Other times, tics are dismissed altogether. Pediatricians will tell parents not to worry because the tics go away. Long-term that’s true for most people, but it could also get a whole lot worse.

Neuropsychiatric Comorbidities

While no two children with Tourette syndrome are alike, nearly 86 percent will have very significant neuropsychiatric comorbidities, such as ADHD, anxiety, OCD and intermittent explosive behavior that is often unrecognized, under recognized or dismissed.

That same TAA survey found the most common thing patients struggle with is not the tics, but the neuropsychiatric comorbidities and the lack of them being treated or recognized. I speak with area schools on a regular basis, because while educators know about ADHD, most don't know what anxiety or OCD looks like for an elementary or middle school student.

Repeatedly, we have patients who are punished at school for involuntary tics because they make sounds in the classroom or roll their eyes and are considered to be “disrespectful.” It’s not surprising many of these kids become depressed, think of self-harm and have suicidal thoughts, because these are kids and teens who clearly act different and sound different from their classmates.

Again, awareness is key. The more primary health providers and educators know about Tourette, the sooner these kids can get the help they need.

The Stigma

There is a great deal of stigma for those living with Tourette, because many people believe it’s a psychiatric disease. In truth, it's a neurologic disorder characterized by involuntary movements that happens to have a high amount of psychiatric comorbidities with it. We need to start thinking of Tourette in the same vein as Huntington and Parkinson’s disease, which are also neurologic disorders.

The way I approach the stigma with patients, families and other physicians is I tell them psychology is just neurology too small to see on an MRI, and all behavior comes from the brain. If you don't have a brain, you can’t have behavior.

Patient Access

The other big takeaway for Congress is understanding the challenges we face when it comes to patient access. Comprehensive Behavioral Intervention Therapy (CBIT) is one of the most scientifically-proved treatments for tics. The non-invasive sensory-motor therapy trains the patient to become more aware of the tic and to perform a competing behavior when the patient feels the urge to tic. CBIT has been shown as effective as any medication used to treat tics, but it’s difficult to find therapists outside large major cities trained to teach CBIT.

While telemedicine would be effective, the laws are such that physicians have to be licensed in the state where the patient is located. Unfortunately, there are no doctors CBIT-certified in Iowa or Nebraska, so patients have to travel long distances to receive treatment.

The other issue we face is with private insurance laws. We consistently see patients from outside of Kansas and Missouri because we’re the only Tourette center in the Midwest, but depending where our patients are from they’re not fully covered. While we can see the child and make a diagnosis, we can’t write prescriptions because we’re not a health care provider in the state where the child resides. The patient’s family is faced with going back to the doctor that referred the child to our center and ask the physician to prescribe the medications. Many times, physicians aren’t comfortable doing this since they’re not familiar with Tourette, the treatment or the medications.

This is a big issue that affects people’s lives every day, and we need to figure out how to get these kids the help we know they need. We’ve got to get rid of state line issue in health care, because it's compromising care. This is not exclusive to Tourette, but all of health care. People are not able to seek the care they need because of what state they live in and our kids deserve better.

Ninety percent of children will have a headache before they’re an adult. Most adolescents and teens experience headaches every few months, which can be treated at home.

However, many children also suffer from migraines, which is a moderate-to-severe headache. Migraines are one of the top leading causes of disability in the country and early treatment is key to help control the debilitating pain. If a child has a headache or migraine more than three times a month, it may be time to see a headache specialist.

Getting the right treatment, at the right time, is important. There are several pharmaceutical and non-pharmaceutical treatments available, whether treating same-day headache pain or developing a long-term plan for headache care and management.

Rescue Medications

Rescue medications are a treatment designed to stop a headache in progress. Two most common at-home rescue medications include Triptans, which are a class of prescription medications that can be administered by nasal spray, injection or taken by mouth. The other is a headache cocktail, which is a combination of over-the-counter medications (such as Naproxen, Tylenol, Excedrin or Ibuprofen) taken in conjunction with anti-nausea medications.

Rescue medications, which are noninvasive and have minimal side effects, can be used for kids who have occasional or frequent headaches. However, to avoid rebound headaches or medication overuse, limit rescue medications to 2-3 times per week and no more than 10-15 times per month.

Prevention Supplements

Nutraceuticals are natural supplements derived from food sources, such as magnesium, riboflavin or Coenzyme Q-10 that have additional health benefits related to headache management.

Taken on a daily basis, nutraceuticals can prevent reoccurring headaches, headache frequency, worsening headaches and headache intensity. It can take 8-12 weeks for the prevention supplements to take effect, so children who live with chronic headaches may need a nerve block to act as a bridge until the supplements begin to work.

Cranial Nerve Blocks

A cranial nerve block is when a needle is placed under the skin superficially and numbing medication is injected into overactive nerves, which helps break the cycle of headaches. It usually takes 2-3 days for a cranial nerve block to work. Once the treatment is effective, patients will have on average 4-6 weeks of pain relief.

IV Infusions

There are many different IV infusions that can help provide pain relief, but the most common IV treatment includes Compazine, Benadryl and plus or minus Toradol.

IV infusions take several hours to become effective and only treats the headache that day.

Cefaly®

Cefaly is a first line treatment plan for kids that suffer from frequent migraines. Cefaly is an FDA approved external trigeminal nerve stimulation device that attaches to the forehead and sends electrical signals to treat and prevent migraine headaches when used 20 minutes daily.

Acupuncture

Acupuncture is an ancient Chinese technique that stimulates points in the body through a series of hair-thin type needles placed in the ear, forehead, scalps, hands and feet, and strengthens the body’s ability to stop pain.

Acupuncture works best when administered accumulatively over the course of 4-6 visits. If headaches or intensity of migraines decrease, patients can continue acupuncture biweekly or monthly.

Botox®

Botox may be best known for its cosmetic benefits to remove wrinkles and fine lines by temporarily paralyzing facial muscles, but Botox can also treat chronic migraines when other treatment hasn’t work.

Botox is a series of injections given to patients who have more than 15 headaches a month (eight of those being a migraine) for the past three months and have trialed other medications without relief.

Self-Regulation and Biofeedback

Emotional issues, stress, being overwhelmed or having difficulties in relationships can all contribute to worsening headaches. Self-regulation is being aware of tension in the body and learning how to stop stress before it happens.

Relaxation strategies such as diaphragmatic breathing, progressive muscle relaxation, and mental imagery relaxation can help transform how a body reacts to stress, as long as practiced on a regular basis.

A healthy lifestyle is also key to controlling migraines, so drink plenty of water, get plenty of sleep and stay physically active on a daily basis.

Comprehensive Treatment

No two headache sufferers are the same, so having a comprehensive approach to headache treatment can lead to better outcomes. That means having all evidence-based therapies available, so individuals can find the pharmaceutical and non-pharmaceutical treatments that work best for them. It’s also important to integrate pain psychologists and social workers into the treatment plan, since headaches can be enhanced by life stressors. It’s this overall holistic approach that is crucial to help reduce headache pain.

]]>Our Experts,Our StoriesTue, 23 Oct 2018 15:10:57 +0200https://content.presspage.com/uploads/1483/500_headachesesparham-0491.jpg?10000Spina Bifida Prenatal Repair: Performing Surgery in the Womb http://news.childrensmercy.org/spina-bifida-prenatal-repair-performing-surgery-in-the-womb/
http://news.childrensmercy.org/spina-bifida-prenatal-repair-performing-surgery-in-the-womb/In the United States 18 babies out of 100,000 live births will have a myelomeningocele, often referred to as spina bifida, which is a congenital defect of the spine and spinal cord. Spina bifida occurs 25-29 days after conception when the baby’s spinal cord fails to develop or close properly and is exposed through a gap in the backbone, which can cause weakness or paralysis in the legs, incontinence, learning disabilities and hydrocephalus (water on the brain).

We spoke with Dr. Emanuel (Mike) Vlastos (pictured left), Medical Director of Fetal Therapy, and Dr. Paul Grabb (pictured right), Section Chief and Neurosurgeon, about the advancements in fetal surgery that make it possible to perform surgery in the womb before the baby is even born.

Dr. Vlastoshas performed hundreds of fetal procedures and is internationally known for his expertise in fetal medicine, particularly prenatal treatment for spina bifida. Dr. Grabbis board certified by the American Board of Neurological Surgery and the American Board of Pediatric Neurological Surgery, and operated on neonates and children with spina bifida for over twenty years.

How is spina bifida treated in the womb?

Dr. Vlastos: We're very fortunate to live in the 21st century and offer cutting-edge options to our patients. Until early 1997, the only option was for a mother to give birth to her child and then have the spina bifida repaired at that time. Today, we can do that repair in utero.

Provided both mom and baby are candidates, we offer repair between 24-26 weeks of pregnancy where we open up the mother’s abdomen, open the uterus like a C-section and expose the baby's back so Dr. Grabb can close the spine.

Dr. Grabb: After the woman’s uterus is open and the fetus floats to the top of the uterus, Dr. Vlastos maneuvers the baby so the back is exposed to the neurosurgeon. Dr. Vlastos holds the baby as still as possible while the neurosurgeon make the repair.

The neurosurgical part of it is very brief. The vast majority of the procedure is spent carefully opening and closing the uterus, so that mom and baby stay safe.

From a technical standpoint, the neurosurgical part is very straightforward and the closure procedure is actually easier to perform in the womb than after the baby is born because the baby is closed up and put back in the uterus, and hence, underwater, I don’t have to worry as much about spinal fluid leakage, keeping a sterile bandage on the incision or infection. I think that’s why these incisions heal so beautifully, because they’re going back to a sterile underwater environment.

Dr. Vlastos: After surgery, the mother needs to stay in the hospital for 4-5 days, so we can monitor her for preterm labor. After being discharged from the hospital, she can return home (if she lives within a 50 mile radius) and finish her recovery for another two weeks. The mother will need to stay in the Kansas City area if she lives more than 50 miles away. It is imperative another adult is with her during this time because if a complication were to occur someone has to help get that mom to the center to be evaluated. After that two week period, the mother will visit her OB every week for an ultrasound to make sure there are no signs of preterm labor. Most moms will give birth between 33-34 weeks, but the goal is for the pregnancy to be promoted until 37 weeks and deliver the baby via C-section.

Not everyone is a candidate for prenatal repair. How does a mom and her baby qualify?

Dr. Vlastos: First, we need know the genetic structure of the baby before we can even consider performing the prenatal repair. An amino synthesis will determine if the baby in the womb has normal genes. If the baby has no other issues outside of spina bifida than the child would be considered for surgery before birth.

However, the mother also has to be a healthy person. To be a candidate for surgery, mom can’t have insulin dependent diabetes, have chronic hypertension, she can't have the AIDS virus or hepatitis viruses. She also can’t have had a pre-term birth in the past, because undergoing surgery puts her at pre-term risk. If she’s already had one baby early, she’s more than likely to have this baby early too.

What are the risks of prenatal repair?

Dr. Vlastos: Even though prenatal repair has been around for two decades, it didn’t start gaining national attention until 2011 when The New England Medical Journal posted about the Management of Myelomeningocele Study or MOMS trial, which compared prenatal and postnatal repair. The study concluded that prenatal surgery had long-term benefits, although the surgery did come with risks.

First, there is risk to the mother. Prior to considering this procedure, we stress to the mom that we’re changing her body forever and how she’s going to have children in the future. Women who've undergone prenatal repair must deliver her child and any future children via C-section, because the scar created on the uterus has the potential to open up if she should labor.

For the baby, the risk is prematurity or even death. In comparison, kids that undergo postnatal repair are usually born around 38 weeks. They’re near term and come out sucking, swallowing and breathing on their own. Babies that undergo prenatal repair are usually delivered at 33-34 weeks. So you’re trading some prematurity to have a prenatal repair.

What are the benefits of prenatal repair?

Dr. Vlastos: The MOMS Trial helped answer that question as well. While there is no cure for spina bifida, repairing the spine in the womb can minimize the spinal defect.

Prenatal surgery also lowers the risk for a shunt. For babies that have surgery after birth, 82 percent will require a shunt to be placed in the brain. This is due to the formation of water on the brain or hydrocephalus. The shunt drains the fluid from the baby’s brain to the peritoneal cavity in the abdomen.

Because a shunt is a piece of hardware it can clog, get infected or break with a national 40 percent rate of some complication in the first year of life.

For babies that undergo prenatal repair, only 40 percent would need a shunt placement in their first year of life. Now that’s not zero percent, but the risk of needing a shunt is cut in half.

Dr. Grabb: Having hydrocephalus and a shunt is a tremendous burden on the kids, the family and the health care system just on the cost of putting them in, maintaining them and taking care of the problems that almost inevitably develop. The MOMS Trial showed babies that underwent prenatal repair had more mobility, more movement in the legs and better neurologic outcomes.

Another benefit about closing the spina bifida prenatally is the child is healed and sealed at birth. The mother can bond, hold and nurse her child without worrying about a fresh incision or spinal defect she can’t put pressure on. Also, there is no fresh incision that could get infected.

Did you ever think you would perform surgery in the womb?

Dr. Vlastos: No, not at all. I was a family doctor in the middle of Wyoming. I had heard and read about it, but I never thought I'd be a part of it. It's been a life-changer for me and hopefully I can continue to spread the word and push the science.

Dr. Grabb: I was an extreme skeptic when it first came out. But the more I saw these kids and talked to the people doing it and now having done it and seen these babies, it's an option that should be seriously considered. It’s also important to note that I couldn’t perform this surgery without the entire team.

Dr. Vlastos: Truly the heart and soul of the Fetal Health Center happens to be the nurse coordinators and the sonographers. That's a fact.

With respect to fetal interventions, you have four different services coming together to help one woman and one baby. First, you need a neurosurgeon to fix the spine. Second, and just as important, you need an anesthesiologist to make sure mom is stable through surgery. Third, is the nursing staff who help with the surgery, who take care of patients before surgery, take care of patients postpartum and take care of the babies. Lastly, you have obstetrical services, which is my role. I help coordinate the care during the surgery, keep an eye on the baby, assist the neurosurgeon, and communicate with anesthesia and nursing care. It truly is a team effort at its best with respect to surgical intervention.

Dr. Vlastos: Our Fetal Health Center is reflective of other centers around the U.S., but what makes us unique is that we’re one of the first to have a fetal center located inside a children's hospital. That means mom can give birth right here in the hospital, so baby is always close by.

Sometimes there are maternal reasons why mom can’t deliver here at Children’s Mercy and she needs expertise in an adult hospital. When that happens she can give birth at Truman Medical Center across the street, which is connected to the Fetal Health Center by the Gary Dickinson Bridge of Hope walkway bridge. This allows both families and staff to walk back-and-forth keeping everyone close.

We couldn’t do any of this without the community who have supported this program and a staff of great people. It really is homegrown.

How does a mother decide if prenatal surgery is right for her and her baby?

Dr. Vlastos: Just because mom and baby are a candidate it doesn’t mean it’s the right thing to do. It’s not an obligation to have the surgery before birth, it’s an option and a choice.

Dr. Grabb: There's not a right or wrong answer. We're not here to convince anybody of having the surgery, we're here to provide the information about the risks and the benefits, answer any questions and let the families make the decision that’s best for them.

Dr. Vlastos has been part of more than 85 prenatal repairs, eight of which he performed with Dr. Grabb at Children’s Mercy from November 2017- September 2018. All eight babies are healthy and growing, and only one child required a shunt.

Did you know: There are nearly 4,000 deaths and approximately 20,000 hospitalizations each year from household fires? As you can imagine, winter is an especially dangerous time of the year due to space heaters, fire places and candles. Half of home fire deaths are due to fires that happen while people are sleeping. This reinforces the need to have working smoke detectors in every room of the home.

Protecting your home against fire involves planning, and there are several precautions you can take to help protect you and your family.

Prevention

Never leave small children alone in the home, even for a minute.

Plan several escape routes from the house and designate a place to meet outside.

Conduct home fire drills.

Do not smoke in bed.

Dispose of cigarette butts, matches and ashes with care.

Keep matches and lighters away from children.

Do not clean clothes with flammable liquids.

Place a barrier around open flames such as candles, fireplaces and outdoor fires.

Do not allow children to wear loose-fitting clothing near a stove, fireplace or open space heater.

Have your heating system checked and cleaned yearly by a professional.

]]>Child Development & Safety,Our StoriesMon, 15 Oct 2018 21:27:34 +0200https://content.presspage.com/uploads/1483/500_smokedetector.jpg?10000Fetal surgery gives babies a new start after spina bifida diagnosishttp://news.childrensmercy.org/fetal-surgery-gives-babies-a-new-start-after-spina-bifida-diagnosis/
http://news.childrensmercy.org/fetal-surgery-gives-babies-a-new-start-after-spina-bifida-diagnosis/With four children 10 and under, Jean and Brendan McPherson are experienced parents. But nothing could have prepared them for the news they received when they went for a routine 20-week ultrasound during Jean’s fifth pregnancy.

At the exam, the technician noticed something concerning. After consulting with a maternal/fetal medicine specialist, the doctor delivered an unsettling diagnosis to the couple—the baby had open myelomeningocele—also known as spina bifida.

Spina bifida happens if the spinal column of the fetus doesn't close completely during the first month of pregnancy. This occurs in one in 3,000 live births in the U.S. If not repaired, it can damage the child’s nerves and spinal cord, resulting in lifelong disabilities that include leg weakness or paralysis and loss of bowel and bladder control.

“When I heard that diagnosis, I felt like the wind had just been knocked out of me,” Jean said. “I had heard of spina bifida, but honestly, I could not have told you what that meant. A whirlwind of questions went through my head … ‘What does it mean? How will she be? Will she walk? Will she have cognitive issues?’ I was afraid for our baby.”

Fast Learners

Early on, the McPhersons learned there are primarily two options to treat spina bifida—leading-edge fetal surgery to close the opening in the baby’s spine before birth; or traditional surgical repair after delivery.

According to research, results from fetal spina bifida surgery are much better than results from traditional surgical repair after birth. In fact, fetal surgery greatly reduces the risk that the infant may need a shunt to drain fluid away from the brain, caused by hydrocephalus. It also has been shown to preserve neurological and leg function. The only catch? Fetal surgery is offered at just a handful of hospitals across the nation.

“I was 20 weeks pregnant, and the fetal surgery has to be performed by 25 ½ weeks,” Jean explained. “We didn’t have any time to waste.”

Because Jean knew long term their baby might need treatment and follow-up care, she scheduled an appointment at Children’s Mercy where the couple consulted the experts in the Elizabeth J. Ferrell Fetal Health Center.

“We wanted to know what our options were and to better understand the diagnosis,” Jean said, “but at that point, Children’s Mercy wasn’t really on our radar screen to perform the surgery.”

Fortunately, during their consultation, Emanuel “Mike” Vlastos, MD, fetal surgeon, joined their appointment.

A highly experienced fetal surgeon, Dr. Vlastos has expanded the Children’s Mercy fetal surgery program to include open myelomeningocele repair and other advanced in-utero procedures.

“Immediately, we could tell that Dr. Vlastos has a passion for fetal surgery and tremendous compassion for his patients,” Jean said. “He carefully laid everything out for us, explaining the pros and cons of fetal surgery versus postnatal surgical closure.”

As the McPhersons left the hospital, Jean said she and her husband had an “ah-ha” moment.

“We walked out of Children’s Mercy very confident in Dr. Vlastos’outcomes,” Jean said.

“To us, the benefits of fetal surgery were clear. We decided if we were candidates, we wanted the fetal surgical closure, and we wanted Dr. Vlastos to perform it. We were confident in his skills and in Children’s Mercy.”

Countdown

At 25 ½ weeks of gestation, Dr. Vlastos, along with Paul Grabb, MD, pediatric neurosurgeon, and the fetal surgery team, opened Jean’s uterus to perform this delicate operation. With the baby still in the womb, the doctors exposed the baby’s back, surgically closing the opening in her spine, then returning her to Jean’s uterus for the remainder of the pregnancy.

The surgery went very well for mother and daughter. After only four days in the Fetal Health Center, Jean went home where she was placed on modified bedrest for the next two weeks. Gradually, she eased her way back to her normal routine.

“Every time we hit a developmental milestone, we felt a little more at ease,” Jean said. Finally, at 34 weeks of gestation, Jean and Brendan knew their baby had reached all the major developmental milestones necessary to be born healthy.

“Each check-up had been good, and it looked like she was developing just as expected,” Jean said. Even so, when the experienced mom’s water broke at 36 weeks of gestation, she was nervous.

Textbook Delivery

“All my other deliveries were textbook, and this was my first C-section,” Jean said. “I didn’t know what to expect.”

Thankfully, Dr. Vlastos did. He expertly delivered 7-pound, 7-ounce, Mary Kate, then handed her off to the neonatal delivery care unit for a thorough check.

“When they told us everything looked fine and that her surgical repair had already healed, we breathed a huge sigh of relief, and said a prayer of thanks,” Jean said.” We feel like fetal surgery gave her a great start—the best chance for a good prognosis long term.”

After just a day and a half in the hospital’s Neonatal Intensive Care Unit, Mary Kate was transferred to the Fetal Health Center to share a room with her mom.

“From there on out, the experience was just like it was with my other babies”, Jean said. “Because her incision had already healed, I was able to hold and cuddle her. Mary Kate was even dismissed from the hospital before I was,” Jean said. “Everything went very smoothly.

Healthy and at Home

At 3 months old, Mary Kate is smiling and cooing.

“She’s a very happy baby with lots of brown hair, just like her mom and her siblings,” Jean said.

Her check-ups to date show no signs of hydrocephalus, and she has good movement all the way down to her toes. Mary Kate will be followed closely this first year to be certain she remains healthy, and she’ll have some physical therapy to strengthen her leg muscles.

“We say all the time if we could have scripted it, this is the way it would have gone,” Jean said. “We wanted to be sure we made the right decision for Mary Kate and for her long-term benefit, not just because it was more convenient to have the surgery done here,” Jean said.

“We felt confident and comfortable that Children’s Mercy was the right place for her care. It was just an added bonus that it was only 10 minutes from our home,” she said.

“That personal, family feel at the Fetal Health Center was very nice and different from my prior birthing experiences at other hospitals,” she added.

Jean’s advice to other moms who might be hearing that same frightening diagnosis of spina bifida is, “Take a deep breath. Everything is going to be okay. I know this all seems overwhelming, but it’s more manageable than you think!

“Looking back, I would choose fetal surgery, Children’s Mercy and Dr. Vlastos again and again,” Jean added. “They had everything covered from A to Z. The care we received was second to none.”

]]>Pediatric Surgery,Our StoriesWed, 10 Oct 2018 17:54:46 +0200https://content.presspage.com/uploads/1483/500_marykateanddr.vlastos.jpg?10000Dr. Shayla Sullivant awarded Individual Advocate of the Year by Grandparents Against Gun Violencehttp://news.childrensmercy.org/dr-shayla-sullivant-awarded-individual-advocate-of-the-year-by-grandparents-against-gun-violence/
http://news.childrensmercy.org/dr-shayla-sullivant-awarded-individual-advocate-of-the-year-by-grandparents-against-gun-violence/Shayla Sullivant, MD, Child and Adolescent Psychiatrist, has been awarded the Individual Advocate of the Year by Grandparents Against Gun Violence Association (GAGV), recognizing her hard work and dedication to the Lock It For Love initiation.

Lock It For Love (LIFL) is a gun safety education initiative launched by GAGV in July 2017 to prevent injuries and deaths from accidental shootings or suicides when curious children, despondent teens or older adults with dementia gain access to unlocked loaded guns in homes. It is based on the success of a similar initiative developed by St. Louis-based Women’s Voices Raised for Social Justice.

Trained GAGV volunteers attend community events offering information about safe gun storage and providing free gun locks to parents, grandparents or other adults who have children living in or visiting their homes. Volunteers are accompanied by a police officer who demonstrates how to properly use the lock and answers questions about safe gun storage.

In its first year, GAGV brought the message of safe gun storage to people attending more than 40 events across the metropolitan Kansas City area and distributed more than 800 free gun locks, in partnership with police officers from Kansas City and Independence in Missouri, and Kansas City, Overland Park and Gardner in Kansas.

Dr. Sullivant is strongly committed to suicide prevention and seeks to promote realistic, practical approaches to keeping children and teens safe. Working with Lock it for Love, she has gotten the word out that “means matter”- advocating for reducing access to the most lethal methods of self-harm, including guns.

The next time you go to the doctor’s office or visit a specialist you may be seen by a physician assistant (PA). PAs are licensed medical professionals that provide many of the same services as doctors. They can diagnose illness, develop and manage treatment plans, and can prescribe medications for patients.

There are more than 123,000 PAs who practice in all 50 states and the District of Columbia. Children’s Mercy has six PAs on staff that work in surgery, plastic and reconstructive surgery, orthopedics and ENT.

History and Training

PAs undergo intensive medical training, are committed to team practice and work under the supervision of the physician, which enables PAs to provide exceptional care to each patient they see.

Although the medical training is shorter, PAs follow a similar path as doctors.

“Don’t get fooled by our title. While we’re the right hand or extension to the physician, we’re also trained along the same pathway as the physician,” said Michon Huston, physician assistant in Orthopedics. “We follow the medical model and are trained alongside interns and residents. We go through 2-3 years of active training, 12-18 months of clinical work with the option to go through with residency and we’re frequently tested to maintain our board certified license.”

The PA profession was established during the Vietnam War era to help get more experienced medical personal practicing medicine.

“The career was actually started in the 1960’s for service members as they came home from the war,” said Emma Lennon, physician assistant in Plastic and Reconstructive Surgery. “They had all this medical training, but couldn't practice as a physician because they didn't have a doctorate. The masters in medicine program was created to get them through the education and into the field faster.”

How are Physician Assistants different from Nurse Practitioners?

Many times when you go to the doctor you might see a Nurse Practitioner (NP), so how do NPs differ from PAs? While PAs are trained to practice medicine using a curriculum modeled on medical school education, NPs are trained in the advanced practice of nursing.

Nurse Practitioners choose a focus area such as primary care, family nurse practitioner, women’s health or nurse midwifery. PAs are educated in general medicine and offer a comprehensive view of all aspects of medicine.

Improving Patient Access

One of the benefits of having PAs on staff is it helps improve patient access, because patients can be seen sooner.

“Patients are going to get in a lot quicker and we’re fully capable of treating patients,” said Huston. “Our license and education fully prepare us to diagnose, order tests and perform procedures.”

Lennon added, “It's nice to be able to provide better access and spend more time with the families because we have more providers,” said Lennon. “My favorite part of my job is getting to know the patients and their families, and being able to provide support and care during some of the most difficult times in their lives.”

]]>Our Experts,Our StoriesMon, 08 Oct 2018 16:28:45 +0200https://content.presspage.com/uploads/1483/500_pa.jpg?10000Children's Mercy Patient Takes a Stand Against Bullyinghttp://news.childrensmercy.org/childrens-mercy-patient-takes-a-stand-against-bullying/
http://news.childrensmercy.org/childrens-mercy-patient-takes-a-stand-against-bullying/Strong. Confident. Defiant. One look at 18-year-old Lexi Martin, and it’s clear her, "Don’t mess with me," attitude has been forged from years of experience, experience dealing with kids who picked on her because they thought she was "different."

"But we’re all different," Lexi said. "That’s what makes us who we are."

A tragic lawnmower accident when she was only 4 years old is just one of the many experiences that has shaped Lexi’s life.

"I fell down the front steps at home and slid under the riding lawnmower," she explained. A devastating injury, Lexi lost her left leg below the knee and was ultimately treated at Children’s Mercy. Shortly after the accident, she was fit with a prosthetic leg.

"I was only a preschooler when the accident happened. I remember very little of it," Lexi said. What she does remember is that kids at school could be cruel.

"Kids teased me and wouldn’t play with me," Lexi said. "I would go home in tears and would ask my mom, ‘Why doesn’t anyone like me? Why won’t anyone play with me?’"

Lexi’s parents were quick to point out that other kids’ opinions of her don’t matter. "They taught me people like that aren’t your friends."

Ann Modrcin, MD, Division Director of Rehabilitation Medicine at Children’s Mercy, has worked with Lexi for years, and said unfortunately, the Limb Differences team often sees this pattern.

"We teach our patients to master two things: their own story and self-confidence. In their own words, they learn to confidently state why they are different, and why it doesn’t matter," Dr. Modrcin explained. "Most of the time, an explanation is all another curious child will need, especially when that explanation is given without anger or resentment, followed by an opportunity to play."

For Lexi, the lessons she learned from her parents and the Limb Differences team have worked.

When she was in the second grade, she remembers a girl who was bullying her, teasing her about her leg, telling her she couldn’t run.

"I stood up for myself. I told her, ‘You are no better than me. I can run just like you can.’ She never bothered me again," Lexi said.

And Lexi proved that bully wrong. She went on to run track in high school, and was her school’s team mascot, the cardinal.

"Growing up, Lexi enjoyed trying new things. Her mom would call me every time, at least at the beginning, to make sure it was, ‘Okay with Dr. Ann,’" Dr. Modrcin said. "The question may have been about tumbling, or swimming, or cheerleading, or basketball, or track and field. They learned that my answer was always ‘YES!’ I assured them that Lexi can and will do everything she decides to try, and that she will do it with style. At nearly every visit, they would bring me a photograph of Lexi doing these things, and her images still grace my office nearly 15 years later."

"I have developed a good network of friends who I can talk with about anything. It’s important to have a good support system," Lexi advised. And her family has always been there for her, reminding her what other kids think isn’t important.

"You can’t let what others say or do affect your day or your life," Lexi added. "You have to be 100 percent true to who you are in this world."

That attitude is why Dr. Modrcin recommended Lexi for Red Card KC, a campaign from Children’s Mercy and Sporting Kansas City that encourages kids to speak up against bullying.

By using the iconic soccer red card—a widely recognized symbol of unacceptable behavior—Red Card KC calls attention to the problem of bullying and encourages positive behavior at schools, on playgrounds, and in the community.

"Lexi is a lovely and vivacious young lady," Dr. Modrcin said. "She exudes confidence whether she is wearing her running leg, her everyday leg, or her modeling leg, complete with pedicure and pumps. Her success against bullying will give her a lifetime of resilience and success in other aspects of life. It is no surprise that we now look to Lexi as a role model against bullies on behalf of other young people, especially for children or adolescents with disabilities."

Lexi thinks the Red Card program is a great idea, and she has some advice for the kids who are doing the bullying.

"Look at yourself in the mirror. Why do you feel like it’s okay to tear someone else down? Stop. That’s not necessary. We all just need to live in a world where we can be kind to one another."

For kids who are being bullied, Lexi said she wishes the Red Card had been around when she was growing up.

"I’ve been bullied," Lexi said, "I know how it feels, but you can’t let that stop you. If someone is bullying you, you don’t have to be mean, but don’t take it. If Red Card had been there when I was in school, I would have given that girl who bullied me in the second grade a whole stack of ‘em!"

For more tips on dealing with bullying and more information about Red Card KC

]]>Sportsmed,Our StoriesMon, 08 Oct 2018 15:59:35 +0200https://content.presspage.com/uploads/1483/500_skccm-class.jpg?10000When a friend’s baby is in the NICU: 10 Things You Can Do to Helphttp://news.childrensmercy.org/when-a-friends-baby-is-in-the-nicu-10-things-you-can-do-to-help/
http://news.childrensmercy.org/when-a-friends-baby-is-in-the-nicu-10-things-you-can-do-to-help/Kaylee Hurt, Parent Support Program Coordinator, ICN Patient and Family Support Services

Childbirth is supposed to be a joyful time, but when a mother gives birth to a preemie she can feel scared, overwhelmed and isolated in the Neonatal Intensive Care Unit (NICU).

I know firsthand what NICU moms are going through, because I was one. My daughter, Kaydee, was born at 25 weeks. She weighed 1 lb., 6 oz. and was 12 inches long. She faced numerous uphill battles and we spent nine months in the NICU before my husband and I brought her home for the first time. That was five years ago. Today, Kaydee is a healthy and active preschooler.

It wasn’t an easy journey, but I learned a lot during my time spent in the NICU at Children’s Mercy. I now work in the same NICU offering my support to other parents, and here are a few things friends and family can do to offer their support too.

Reach out, but don’t expect a reply

Let the new mom know you’re thinking of her and her family. The support is appreciated and means so much, but just know it’s impossible for her to respond to everyone.

When you do speak with the mom, don’t try to relate to her and don’t say “I know how you feel,” because unless you had a baby with the same challenges you don’t truly know how she feels. Instead, just listen. That’s what she needs most during this time someone to just listen.

Tip for NICU moms: Ask a family member to return calls and texts for you. You can also keep friends and family updated through Facebook. I found it was a quick way to share information broadly and it reassured me that I didn’t have to respond to everyone individually. Another tip, limit yourself on Facebook, because it’s hard not to compare your life to others around you.

Say Congratulations

Tell the parents congratulations! This is supposed to be a happy time and even though it’s not exactly what they had hoped for, they still had a child, which should be celebrated. It’s just a different type of celebration.

Tip for NICU moms: This won’t be the celebration you had envisioned, but make sure to celebrate the milestones.

Give Preemie Parents time to Grieve

Family and friends need to understand that grieving is part of the process. While parents are happy their child is alive, they’re also grieving the loss of what they thought was going to be a joyful time, so they need to work through their emotions.

Tip for NICU moms: Recognize that family and friends are also mourning in their own way. My parents had a hard time, because they had to watch me and my family go through the pain and suffering, and they couldn’t do anything about it.

Offer Rides to the Hospital

Something as simple as offering a ride to-and-from the hospital is an easy way to help and can make a world of difference. We lived an hour away, so friends that worked in Kansas City would give me rides to the hospital. My mom or husband would come to visit in the evening and bring me home.

Gas cards are another great gift. The miles can quickly add up when you’re driving to the hospital every day.

Tip for NICU Moms: Go home at night and sleep if you can. You need to take care of yourself, so you can take care of your child to your full potential. Build relationships with the nurses so you feel comfortable leaving the hospital. I would call and check on Kaydee as soon as I got home, before I went to bed, if I woke up in the middle of the night and again in the morning before I headed back to the hospital. I tried to be as connected as possible while away.

Provide Meals

Preparing dinner is the last thing on any NICU parents’ mind. Provide the family with a home-cooked meal, so they don’t have to eat hospital food day after day. Also think about making individual portions that can be frozen and brought to the NICU for lunch.

Give gift certificates to area restaurants. My husband and I always appreciated gift certificates and would go out to eat on our way home from the hospital. We may not say two words to each other, but it was nice to go to dinner and not have an expectation to relive the day.

Make grab-and-go snack packs. Having healthy snacks on hand in the NICU is a must. Granola bars, trail mix and even fresh fruit is a quick way to reenergize throughout the day.

Tip for NICU Moms: If someone offers to take you out for lunch, go! You need to eat and leaving the unit for a couple hours will do you good. Also, don’t forget to drink plenty of water.

Give Coins

It’s not something you think about, but NICU parents need quarters for the vending machines. A church group gave us a basket full of goodies, which included five dollars in quarters and it was a great gift, because you never have change when you need it.

Tip for NICU Moms: Money can carry germs and bacteria, so it’s important to wash your hands after touching dollar bills and coins to help prevent your little one from getting sick.

Give a Journal

A journal makes a great gift. Some moms find it therapeutic to write about their experience in the NICU. In addition to a journal, you can also give word puzzles, adult coloring books and magazines.

Tip for NICU Moms: Don’t forget to take lots of pictures. You baby is growing bigger every day and you’ll want to look back at the milestones someday.

Help with Chores and Pets

Clean the house and do laundry. My mom, her friend and my sister-in-law did this without asking me, because they knew if they’d asked I’d say “no,” but it was so nice coming home to a clean house and clean clothes.

Walk the dog, buy pet food so it’s one less thing they have to worry about or even offer to foster the family pets during the NICU stay.

It’s always the little things that helped the most.

Tip for NICU Moms: Friends and family are going to offer to help. Let them! It gives them a way to show support and it really does let you focus on your family.

Help with Siblings

Parents are juggling a lot during their stay in the NICU, but its important siblings maintain a routine life as much as possible. Offer rides to school, practice or games. Have a playdate or a sleepover, so parents can spend time at the hospital.

Tip for NICU Moms: The hospital has a lot of great programs for siblings. Utilize Child Life for support. They can meet with the sibling and go over what they’re about to experience and they can help entertain kids at the bedside. Include other children in your baby’s care if they’re old enough. After Kaydee came home and we finally got to the point where we’d go out places, I’d have my nieces and nephews be in charge of making sure everyone washed their hands. They took this responsibility very seriously as it was a way for them to help keep Kaydee healthy.

Don’t Forget about Dads and Partners

While moms and babies are usually the main focus, don’t forget about the dads and partners. They also need to take care of themselves and are dealing with the same emotions.

Many times the significant other is still going to work and they’re dealing with the guilt of not being at the hospital every day. Make sure to reach out and let them know you’re thinking of them.

Tip for NICU Moms: Your significant other is really the only other person that knows what you’re going through, so take time for each other. While your child is important, your relationship is as equally important and you’ll need each other to get through this.

Kaylee and her daughter, Kaydee, were featured on Inside Pediatrics in 2014. Watch here.

]]>Neonatology,Our StoriesTue, 02 Oct 2018 14:52:28 +0200https://content.presspage.com/uploads/1483/500_unit--11.jpg?10000Corneal Crosslinking Procedure Improves Teen's Visionhttp://news.childrensmercy.org/corneal-crosslinking-procedure-improves-teens-vision/
http://news.childrensmercy.org/corneal-crosslinking-procedure-improves-teens-vision/Noah DeFerraris is a 17-year-old high school senior who’s taking a heavy load of college prep courses, like AP calculus and biomedical innovations, courses where being able to see the classroom board is critical.

“At the beginning of my sophomore year, I started having problems seeing, especially in the classroom,” Noah admitted. “Even if I was sitting in the front row, I had to squint to read the board.”

When he went for his annual eye exam, his optometrist noticed Noah’s vision was much worse than the year before.

“Noah has worn glasses and contacts since the first grade,” said his mom, Rose DeFerraris. “But this was different. He couldn’t even read the giant ‘E’ on the eye chart. His vision was terrible.”

Noah’s optometrist suspected he might have a condition called keratoconus, a progressive thinning and distortion of the cornea causing blurred or hazy vision and sensitivity to bright light. Keratoconus affects about one in 2,000 people and is more common in children with allergies and Down syndrome, and is usually diagnosed in adolescence or early adulthood.

“Noah has severe allergies and asthma, and often has rubbed his eyes. The doctor thought that might have contributed to the condition,” Rose explained.

After a test to map the shape of his corneas, the doctor concluded that Noah indeed had keratoconus. Initially, Noah’s optometrist treated the condition with glass contact lenses, but they were uncomfortable and difficult for him to wear.

“Noah’s eyes were red all the time, and he was still having trouble seeing,” Rose said.

In her job with Liberty Public Schools, Rose said she frequently refers students to Children’s Mercy Kansas City, so she decided to contact the hospital about Noah.

“I called the main number and explained that my son had been diagnosed with keratoconus,” Rose said. “They scheduled an appointment for Noah to see Erin Stahl, MD, an amazing corneal eye specialist with a great bedside manner!”

Dr. Stahl confirmed Noah’s diagnosis, and told him about a new option to treat the condition called corneal crosslinking. Children’s Mercy was the first pediatric hospital in the nation to perform corneal crosslinking, a treatment approved by the Food and Drug Administration.

“Until recently, we treated keratoconus with glasses, then contact lenses, but at some point, scar tissue develops and the contact lenses no longer work,” Dr. Stahl explained.

For about 20 percent of patients, the next step is a corneal transplant, which is expensive, can be risky and requires a lengthy recovery period.

Though keratoconus can’t be cured, the goal of corneal crosslinking is to halt the progression of the condition. The procedure is performed on an outpatient basis. Most patients heal quickly and are back to their usual routine in a week to 10 days.

During the procedure, Dr. Stahl makes an incision to loosen the superficial layer of the cornea. Drops of riboflavin, or vitamin B2, are dripped onto the eye every two minutes, along with anesthetic every five minutes, for a half hour. The riboflavin-soaked cornea is then exposed to ultraviolet light for another 30 minutes. The light strengthens the bond between the riboflavin and collagen molecules, stiffening their fibers and ultimately strengthening the cornea.

“This is actually a natural process,” Dr. Stahl explained. “Riboflavin is naturally in your tears, and once we reach about age 50, we become naturally cross-linked. But that takes more than 30 years.”

Dr. Stahl completed the first corneal crosslinking procedures in February 2017. Noah’s first procedure was performed on his right eye in May 2017, and his left eye was completed in July 2017.

Dr. Stahl worked with Christina Twardowski, OD, optometry, to create a special pair of glass contacts that help Noah see 20/20. His eyes healed just in time for the start of his junior year of high school.

Now a year later, Noah said the procedure did what it was supposed to—stop the progression of the keratoconus. In addition to wearing the glass contacts, he will return to Children’s Mercy once a year until he turns 21 so that Dr. Stahl can be sure his vision remains stable.

In the meantime, he’s working hard, taking advanced placement courses to prepare for college, and a possible engineering major.

“I can see a lot of things I couldn’t see before, like road signs and the board,” Noah said. “I’m definitely glad I had the surgery. Dr. Stahl was great and my vision is better than ever!”

]]>Rare & Complex Conditions,Our StoriesMon, 24 Sep 2018 20:29:32 +0200https://content.presspage.com/uploads/1483/500_cornealcrosslinking-1.jpg?10000Children's Mercy Hospital-Based School helps kiddos keep up with classwork and ‘feel more normal’http://news.childrensmercy.org/childrens-mercy-hospital-based-school-helps-kiddos-keep-up-with-classwork-and-feel-more-normal/
http://news.childrensmercy.org/childrens-mercy-hospital-based-school-helps-kiddos-keep-up-with-classwork-and-feel-more-normal/When she was a classroom teacher, Gayle Domsch, EdD, typically spent the first days of a new school year attending curriculum meetings, putting up bulletin boards and setting expectations for incoming students in basics like how to walk quietly down the hall.

But recently, Gayle’s first week of teaching for the new school year was more like this:

“I have a preschooler for cognitive stimulation, a kindergartener, a 4th grader for math, and an 8th grader for Spanish and science,” said Gayle, one of three teachers in Children’s Mercy’s Hospital-Based School program. “I checked in with seven high school students who are just starting classes, and met with social workers to talk about school needs emerging after the first three days of classes.”

Back-to-school week for Gayle’s fellow hospital-based school teachers Lori Simpson, BS, and Shawna Mazeitis, MA, were similarly diverse: setting up technology to connect patients with their classrooms, quelling the anxiety of a 6th grader anxious about missing the first day of middle school, enrolling a young cancer patient in kindergarten to help his overwhelmed mom, and organizing assignments for a high school student scheduled for heart surgery so she can start her classwork once she’s out of ICU.

While medical treatment takes precedence for seriously and chronically ill children, academic work at their instructional level is important to their well-being, too. And that makes Children's Mercy’s Hospital-Based School, one of only about 60 such programs in pediatric hospitals across the country, a vital component of care.

“These kids need and deserve the same education everyone else takes for granted,” Gayle said. “They are battling for their lives, and just want to be normal and have school like all their friends.”

“School is like a job for kids,” added Shawna. “Having school in the hospital eases their anxiety and gives them a piece of normalcy back. Plus, they think, ‘if I still have to do homework, maybe I’ll be okay.’”

Or as Lori puts it: “Getting them in school helps them get better.”

A small but mighty team

Children's Mercy’s Hospital-Based School services are available at the Adele Hall Campus to elementary and secondary school-age children hospitalized more than five days or receiving lengthy outpatient treatment, according to Kim Robertson, MBA, MT-BC, Manager-Music Therapy and Hospital-Based School.

Bedside school instruction is available September through May for students from any school district in the region, public, private or home-schooled, with summer learning experiences offered in June, July and August.

As the three teachers on staff working year-round, full- and part-time schedules, Gayle, Lori and Shawna are certified and licensed in Missouri and Kansas, and together bring a nearly a century of teaching experience to their work. As many as 10 volunteers, also certified teachers, supplement their school-year efforts.

That experience matters in meeting the instructional needs of children of all ages in multiple subjects, and entails everything from initial assessment and developing individualized instruction plans to helping with homework and advocating for families with teachers and administrators at the child’s home school.

“The average absence for the kids I work with is 24 days, and schools often don’t know how to cope with the interruption,” said Gayle, who works primarily with patients on dialysis and in rehabilitation for spinal cord and traumatic brain injuries. “There is no practical way to make up everything they miss, but just excusing these kids from doing all the work and freezing their grades makes it difficult for them to re-engage in class when they return.

“The best scenarios are when the school prioritizes, collaborates and adapts so the patient/student is able to successfully complete enough work to learn, but doesn’t have so much they are overwhelmed and discouraged,” she said.

“Being a liaison with the school is becoming more important as the program grows,” Shawna added. Her patient group includes children with diagnoses for sickle cell, cancer, gastrointestinal and heart conditions, and she understands the importance of building good relationships with schools throughout the region to support children and their over-burdened parents.

“For kiddos with cancer, it’s important to find a time when they are feeling well enough to work. Sometimes we must set reasonable expectations with the classroom teacher,” Shawna said. “It’s a tightrope we walk.”

Lori works primarily with children living with cystic fibrosis and orthopedic conditions, so many of her students have missed a lot of learning over many years.

“Kids with cystic fibrosis have lived with a chronic disease their whole life, and have been absent from school repeatedly over time,” she said. “It’s hard on them and their families. But it’s our job to give them hope and motivation for their future.”

‘Full circle’

Despite the complexity, the rewards of teaching seriously and chronically ill children are many.

“For me, it’s a great day when I figure out what a child needs, create a lesson he or she likes to do and is able to complete it, even when not feeling well,” said Shawna.

For Lori, satisfaction comes in knowing her work has helped a high school student earn enough credits to graduate – and the academic success, personal growth and sense of normalcy she’s enabled in the process.

“Gayle and I recently put together a graduation gift for a student we’ve both worked with,” Lori said. “Her thank-you note acknowledged the items we’d given her, then added, ‘ultimately, thank you for always making me feel special and not treating me like I am sick. It means the world to me.’”

And for Gayle, it’s all about her students’ accomplishments.

“The heart of a teacher is the success of a student, and as hospital-based teachers we often lack the advantage a full school year provides to see students develop and grow to their potential. They come, we do what we can, and they go,” she said.

]]>Child Development & Safety,Our StoriesMon, 24 Sep 2018 18:16:23 +0200https://content.presspage.com/uploads/1483/500_cmteaching-13.jpg?10000Postpartum Depression: A Guide for New Mothers http://news.childrensmercy.org/postpartum-depression-a-guide-for-new-mothers/
http://news.childrensmercy.org/postpartum-depression-a-guide-for-new-mothers/According to the CDC, about 1 in 9 women experience symptoms of postpartum depression. While many women experience the “baby blues” in the first two weeks after having a baby (worry, sadness, and tiredness), these symptoms usually resolve on their own. Postpartum Depression is more intense and lasts much longer.

We spoke with Kara Hansen, Social Worker, (pictured left) and Melissa Liddle, APRN, (pictured right) about Postpartum Depression, the symptoms and treatment.

Both work in the Fetal Health Center and provide advanced care for patients with select high-risk pregnancies before, during and after delivery. Moms are seen one or two weeks post-delivery and are screened for Postpartum Depression.

What are the signs of Postpartum Depression?

Melissa: First, it’s important to know that Postpartum Depression doesn’t make someone a bad mother. Many women struggle with Postpartum Depression and they’re not alone. One of the best things we can do is educate moms and partners on what Postpartum Depression looks like and who to contact if she is concerned she has symptoms.

Kara: We try to stress to mothers that Postpartum Depression is really the broader term of perinatal mood and anxiety disorders. It doesn’t always look like that symbolic medication commercial we've seen, where someone is struggling to get out of bed or not connecting with people. Often times, it can manifest into irritability and anger or feeling overwhelmed, and that really surprises a lot of moms.

Other signs include anxiety, difficulty bonding with the child, frequent tearful moments, sleep disruption, changes in appetite and feelings of guilt. At the end of the day, if you don't feel like yourself you need to speak with an Obstetrician or other healthcare professional that could be helpful in this situation.

How long does Postpartum Depression last?

Melissa: While depression is most common after delivery, it can happen at any point during pregnancy and last up to a year post-delivery, which is why seeing a healthcare provider routinely is important.

As many as 40 percent of women who give birth don’t schedule a postpartum visit with their provider. According to the American College of Obstetricians and Gynecologists, women should have contact (either in person, or over the phone, etc.) with their care provider within three weeks of childbirth. This touchpoint allows providers to assess the risk for Postpartum Depression. In addition to the three week checkup, a comprehensive visit should take place within 12 weeks of delivery.

Kara: A mother is also at higher risk if she has a preexisting condition of depression or underlying anxiety. The weeks following childbirth are critical and it’s important for doctors to assess the mother’s physical recovery from birth, mood and emotional wellbeing and infant care.

What should moms do if they think they have Postpartum Depression?

Melissa: Reach out and ask for help. Talk to a healthcare provider, whether it’s the delivery provider, a primary care provider, or mental health professional. They can also speak with a counselor, their partner or other family members. If something feels “off”: please, reach out.

Kara: I think there's a lot of shame associated with Postpartum Depression, especially as a new mom, because everyone is saying you should be excited - you have this new beautiful baby and everything is wonderful. When in reality, someone struggling with Postpartum Depression likely does not feel that way. Kansas City is very fortunate in that we have the Pregnancy and Postpartum Resource Center and I would encourage anyone in the region dealing with Postpartum Depression to call (913) 677-1300. They have trained volunteers available through a “warm line” and can offer support and guidance by phone.

How do you treat Postpartum Depression?

Kara: Medication is the most formal treatment for those who are clinically depressed. For those with moderate or mild depression, self-care strategies, routine and coping skills can help. For instance, maybe a mom is having trouble with sleep. Literature shows if we can address those sleep problems, in general, the mood usually improves. When moms are burning the candle at both ends it doesn’t serve them or the baby well. This is especially important for moms who have a child in the Neonatal Intensive Care Unit to understand that it’s ok to go home and get some sleep. For busy new moms, a coping skills that we often frequently recommend is using a meditation app, which doesn’t take away time from their routine. They can plug in headphones and listen at any time. Some people also find it cathartic to write thoughts briefly in a journal.

Melissa: As Kara noted, sleep is critical to one’s well-being especially in the postpartum mother. If possible, overnight assistance is beneficial; overnight help can include providing assistance with newborn care. If mom is lactating and pumping, let them clean the pump and equipment so you can get back to bed. Adequate nutrition is key. Moms, especially those who are lactating, should pack snacks that provide protein and carbohydrates, and are ready to grab-and-go. Consume healthy snacks after breastfeeding or pumping. Given the benefits, moms are determined to provide human breastmilk; however, this can lead to maternal sleep deprivation and neglect regarding their own nutrition and hydration.

How can friends and family help new moms?

Melissa: The key is to let the mother focus on self-care, and limiting other life stressors for her. Do tangible things, such as offering to help with laundry, house work, feeding the baby when possible or taking care of siblings.

Kara: Every mom is different and has different needs. Maybe someone has mail they need picked up down the end of the street or a dog that needs walked. Friends and family will often ask how they can help, so we encourage moms to write out a list before birth, because it’s hard to reach out for help when struggling.

What is the biggest takeaway for moms?

Melissa: Every adult should be screened for depression once a year, using a validated screening tool, and all women should be screened during pregnancy and postpartum. Know the symptoms of perinatal mood disorders, what you can do, and how you can be empowered to reach out for help.

Kara: A healthy mom means a healthy baby. For most people, postpartum depression is treatable, especially if they get in front of it early. We really encourage moms to reach out when they first have symptoms and not let it worsen or build. It’s really about that continuation of care.

Recommended Meditation Apps:

]]>Neonatology,Our StoriesMon, 17 Sep 2018 16:56:42 +0200https://content.presspage.com/uploads/1483/500_momandbaby.jpg?10000Sporting KC’s Melia, Sinovic and Zusi honored for time spent with biggest little fans at Children’s Mercy http://news.childrensmercy.org/sporting-kcs-melia-sinovic-and-zusi-honored-for-time-spent-with-biggest-little-fans-at-childrens-mercy/
http://news.childrensmercy.org/sporting-kcs-melia-sinovic-and-zusi-honored-for-time-spent-with-biggest-little-fans-at-childrens-mercy/Many Sporting KC players have spent time at Children’s Mercy through the years, but Tim Melia, Seth Sinovic and Graham Zusi visit with our patients and their families on a regular basis. And whether it’s a good game of Hedbanz or UNO, getting involved at craft time or stopping by a room to talk, everyone enjoys their time together. The players also do an amazing job of sharing the hospital’s mission in our community. For those reasons, Children’s Mercy on Tuesday honored Tim, Seth & Graham, along with Brandi Thomas and Lexi Brady from The Victory Project, as September’s Volunteers of the Month.

For more about how these Sporting KC teammates help the hospital and our kids, here are the opening remarks shared by Trista Williams, Volunteer Program Coordinator in Patient & Family Support:

"I have been told many times that I have the best job in the hospital. I can’t argue with that, but what makes my job amazing, is the people that I have the pleasure of working with on a daily basis. One of my hats during my work day, is bringing special events and visitors to our patients. And while some say a “perk” of my job is touring local athletes and celebrities around the hospital, the biggest perk is seeing the faces of our patients when they get to meet these individuals that volunteer their time. Today I have the honor of telling you all a little bit about our September Volunteers of the Month. I cannot talk about what Sporting KC does for our patients without first talking about two important people. There are not enough words to express how much I appreciate the behind the scenes organizers, Brandi Thomas and Lexi Brady. Lexi is unable to be here today, but I didn’t want her to go unnoticed. These two ladies, through their work with the Victory Project, schedule the Sporting KC players to visit our patients at LEAST monthly. If I have an event that I think would benefit from having players attend, they will get them there. Brandi and Lexi constantly talk about our organization and what we do for our patients and families and have made even the most unusual requests happen. Without the two of them, we would not have the presence of our Sporting KC players in our hospital. I started in this role in the beginning of 2016 and Sporting KC and the Victory Project have clocked in over 400 volunteer hours in those two years. They have brought players to prom, to call bingo, to hold a soccer clinic during our Camp Week and they bring the three players to monthly visits that I am going to acknowledge shortly. These ladies are helpers, encouragers, humanitarians and philanthropists. They do so much more than bring players to the hospital and I am lucky have them in my corner when it comes to patient events. What the SKC players do for our patients and families wouldn’t be possible without the organization and outreach of Brandi and Lexi, and for that, Children’s Mercy thanks you!

When you think of Sporting Kansas City, what do you think of? Soccer players. How about when you hear the names Graham Zusi, Tim Melia and Seth Sinovic? I am here to give you other things to think of them besides their soccer talent. While they are a part of a great organization and do some amazing things on the field for our local team, what they do here for our patients is what I want forever engraved in your mind. While we have a variety of Sporting players that come to our special events, these three guys come every month to brighten our patients’ days. You may know Graham for his influential play on the soccer field as a world-class athlete and Tim for his drive and determination as a goalie and Seth for his defensive game as a loyal hometown player, but I know these guys for the heart they wear on their sleeve during their visits with our patients. Whether it’s showing off their artistic side with some glitter and paint (and, let’s be honest I use the word “artistic” loosely, they should stick to soccer) or their competitive and goofy side with an intense game of Hedbanz, these guys never miss a beat when meeting our patients. They have even been known to get down and dirty with the game Toilet Trouble and to belt out a Disney tune upon request. If we ask them to do it, they will make it happen. There have been visits that these guys are the only thing that has gotten a teen patient out of their room during their hospitalization. Not only did these patients leave their room and join their peers in the playrooms, they were actually smiling and having a good time during that visit. There have been multiple visits patients were so excited to meet one of these players, that for that time during that interaction, patients weren’t thinking about their procedure or their diagnosis, they were thinking about how special these three guys made them feel. These guys are busy. Not only do they have games, but they have practices and appearances throughout the community and also families to spend time with. They never let their busy schedules get in the way of their time with our patients. These guys are humble, I think sometimes they are surprised at how excited some of our patients are when they walk into a room. These guys are the reason I became a SKC fan because they are the epitome of what an athlete should strive to be, both on and off the field. These guys are heroes to so many of our patients within these walls. And if you didn’t already know, these guys are inspirational for the time and energy they give our patients during each and every visit.

I found this quote that describes these 5 individuals perfectly. “Volunteers don’t necessarily have the time, they just have the heart”. And boy, do they all have the heart! Please join me in congratulating our September volunteers of the month, Brandi Thomas, Lexi Brady, Seth Sinovic, Graham Zusi and Tim Melia who always make the time when it comes to Children’s Mercy and our patients."

Parents of infants and children with respiratory or cardiovascular conditions that use smartphone-integrated consumer pulse oximetry baby monitors need to know these over-the-counter devices may not be accurate.

A pulse oximetry measures the oxygen saturation level of the blood and how well that oxygen is being sent from the heart to other parts of the body. Many parents are drawn to this technology to reassure their child is sleeping safely during the nighttime hours, but new research regarding the accuracy was recently published in The Journal of the American Medical Association. Our colleagues at the Children’s Hospital of Philadelphia studied two different models accessible to parents and found the devices have inconsistent readings compared to FDA-approved monitors.

The Danger of Inaccurate Information

In several instances, the consumer devices indicated the child may be in distress when in fact the child was fine. The consequence of inaccurate information can lead to increased parental anxiety, unnecessary visits to the Emergency Department (ED) and unnecessary testing of the baby.

On the other hand, misinformation that reassures the parent can be detrimental for babies. False-negative findings suggest the baby has “normal blood oxygen saturation” when the child does not. This is dangerous, especially if the child truly has poor blood oxygenation as a result of congenital heart disease, chronic lung disease, or even an acute episode of viral or bacterial bronchiolitis or pneumonia.

Why Parents Use Home Monitoring Devices

Most often parents use a home pulse-oximeter for one of three reasons. The first, is if there is a history of a critically-ill baby in the home that required home monitoring or maybe an older sibling is still home-monitored for congenital heart disease or a chronic respiratory problem. The parents, who are already on high-alert, are looking for reassurance even though the current newborn has no health concerns.

The second reason may be the parent has lost a child, whether due to Sudden Unexpected Infant Death, heart disease, lung disease or central nervous system disease. Again, parental anxiety is already heightened and monitoring may provide some peace of mind. In either situation, a discussion needs to be had with a pediatrician or other health care professional about whether or not the child qualifies for, or would benefit from, home monitoring. If recommendations are met, the child would be prescribed an FDA approved device as opposed to over-the-counter smart phone technology.

The third reason many parents use an over-the-counter device is because parents are becoming increasing tech savvy. Parents have used baby monitors and cameras to monitor a child’s movement and sound for years. This is just one more technology available on the market.

Why FDA Approval is Important

The FDA regulates medical devices used for improved health or treatment of health conditions. For instance, if a child needs oxygen at home, an oxygen tank which can regulate the flow of the oxygen, and a monitoring device such as a pulse-oximeter or an apnea and bradycardia alarm is required. An FDA-approved device has been tested for accuracy, precision and appropriate use in the home, and the agency has determined the benefits of the product outweigh the known risks for the intended use.

If the device is not FDA approved, such as the over-the-counter home pulse oximeters, it means the consumer isn’t protected when using the device.

Takeaway for Parents and Pediatricians

Both consumers and clinicians need to be informed about pulse oximetry-based home baby monitors and make well-informed decisions about the appropriate use of the device.

Pediatricians caring for at-risk NICU graduates should be aware tech-savvy parents might be inclined to use these devices, and should let parents know the machine is not as precise as desired and doesn’t meet FDA standards.

There may be a day when over-the-counter physiologic monitoring technology using a smartphone app will be FDA approved. Until then, parents should do their own research and know what they’re buying. They should also have open discussions with their pediatric health care professional to determine whether it's appropriate to continue using the device.

If a parent uses a consumer home monitor they need to look at the condition of the baby (color, activity, breathing) and not just pay attention to the pulse-oximeter saturation or heart-rate value. If a child is cyanotic (blue), lethargic or has respiratory problems, the child needs to be taken to the ED for a thorough evaluation. Bottom line, don’t simply trust a home evaluation with a smart-phone app.

]]>Child Development & Safety,Our Experts,Our StoriesFri, 31 Aug 2018 15:25:17 +0200https://content.presspage.com/uploads/1483/500_pulseoximeter.jpg?10000Weight-Loss Surgery for Children: Expert Q&Ahttp://news.childrensmercy.org/weight-loss-surgery-for-children-expert-qa/
http://news.childrensmercy.org/weight-loss-surgery-for-children-expert-qa/Childhood obesity is an epidemic in the United States. More than 3-million children are overweight for their age and height. Obesity can lead to diabetes, high blood pressure and high cholesterol. If not addressed, children can have significant health issues throughout their childhood and adulthood.

Dr. Jason Fraseris a pediatric surgeon and performs bariatric surgery at Children’s Mercy. He also serves on the American Pediatric Surgical Association Pediatric Obesity Committee.

Recently, we spoke with Dr. Fraser about the type of surgery he performs, misconceptions about obesity and his advice to parents before considering surgery for their children.

What type of procedures are available for children, and what are the benefits and drawbacks of each?

Dr. Fraser: There are a couple different options: the most common are the laparoscopic sleeve gastrectomy and the laparoscopic gastric bypass. In the sleeve gastrectomy, a good portion of the stomach is removed and this limits the amount of food that can be taken in. In the gastric bypass, a small pouch of stomach is made which is then re-routed to a section of small intestine. This procedure limits the amount of food able to be taken in and also limits the absorption of the food.

We perform the laparoscopic sleeve gastrectomy at Children’s Mercy. The advantage of the surgery is that it’s minimally-invasive (laparoscopic) and only a few small incisions are made. We use a small camera and special tools to remove a large portion of the stomach, including the part that produces the hunger-inducing hormone ghrelin. That way, when the child eats, they feel full sooner.

The biggest drawback to the sleeve is that most of the stomach is gone, but this procedure doesn’t require the anatomy to be rerouted like it does in gastric bypass.

In a gastric bypass procedure, the surgeon will leave a small pouch of stomach and reroute the lower part of the intestine to the stomach. This procedure limits the amount a food a person can take in and decreases the amount the body can absorb. The biggest long-term risk with bypass is nutrition deficiencies. Because the intestine is rerouted, the patient will need lifelong replacement of vitamins and nutrients.

While both surgeries are very safe, it is felt the laparoscopic sleeve gastrectomy is easier on the developing adolescent body and you do not see the nutritional deficiencies seen in the bypass.

What is the minimum age for surgery and are there other requirements?

Dr. Fraser: We do have a certain criteria to determine if surgery is the best option for a child. Our target demographic is adolescents, ages 10 or older. However, we would consider younger children if there were specific circumstances.

Bariatric surgery patients need to have a body mass index of at least 40 (or above 35 if other medical conditions like type 2 diabetes, sleep apnea, fatty liver disease or others are present). They also need to have a stable and supportive home situation because they will need help after the operation.

When a patient meets those criteria they have to participate in six months of supervised medical weight loss. We want to make sure they’re committed to the program and doing what they need to do, because it’s a significant undertaking before and after the operation. Making a change to living a healthy lifestyle before surgery and continuing it after surgery is a big part of being successful. We also want to make sure there are no other medical issues that need to be addressed before an operation and to give them a chance to lose weight without an operation.

The child will meet with a dietician to identify what they’re eating and how they’re eating. They’ll keep a journal of their food and start to transition to how they’ll be eating after the surgery, since the diet will significantly change.

Each child will receive a psychological evaluation to better understand his or her specific needs in the lifestyle change process. The child and family will also regularly meet with a psychologist and/or social worker and exercise physiologist as part of their medical appointments to help implement change.

Everything we do pre-op is getting the patient ready for post-op and the life they’re going to have after surgery.

Why is this multidisciplinary approach important?

Dr. Fraser: The biggest benefit to having our medical and surgical weight loss teams work together in one location is that it provides patients with comprehensive care. Having open communication improves patient access and facilitates patient care. We talk on an almost daily basis about our patients and we’re all working toward the same patient-centered goal.

Some critics say that obesity is a lifestyle issue, and adolescents should lose weight by exercising and changing their diet vs. having the surgery. What do you tell those critics?

Dr. Fraser: Obesity is much more than just a lifestyle issue and to try to distill it down to this is unfair. I tell the critics, yes, you can try and change the lifestyle of these children, and even with this operation they’ll still have to change their lifestyle. This is why prior to an operation there is the required supervised medical weight loss period. But things can gets to a point when lifestyle changes alone are not enough.

Sometimes even when the child eats healthy and loses weight it’s not significant enough to impact the child’s overall health. Then the safest and best thing for them is an operation.

When you have a patient who has severe obesity they’re at risk for having the secondary effects like high blood pressure, diabetes, sleep apnea, fatty liver disease and an increased risk of heart disease.

Obesity is disease, like cancer. Sometimes you treat cancer with only chemotherapy and that works, but a lot of people will also need surgery. Left untreated, the cancer will shorten their lives. To deny a proven operation or proven treatment will actually cause them more harm. The same is for obesity, why would we deny these children potentially a life-saving procedure?

What do you tell people who think having surgery is “the easy way” out?

Dr. Fraser: It’s not an easy way out. You have to have tremendous commitment before and after the operation. It’s a complete lifestyle change in what you’re eating, how you’re drinking and how you’re exercising.

There’s a lot of bias out there and misconception that children with obesity are not trying hard enough. However, for many patients they’re eating the right things and exercising, but they just can’t get to the point where they need to be.

As a health care industry, we need to help shift this way of thinking and bias, and give people the education to really understand this epidemic. This is not just a social problem that will take care of itself. To think that way is short-sighted. The more we talk about obesity and how it’s a medical issue, the more people will begin to understand it.

The bottom line is that if you have a patient with significant overweight at 12, then there is a good chance you are going to have a patient with significant overweight well into adulthood and have complications related to their weight.

What advice do you have for parents considering surgery for their child?

Dr. Fraser: The biggest thing I’d say is do your research, talk to your pediatrician and talk to your child. Be open and honest with them and find out what they want. Also, consider talking to a surgeon. Find one that will support your child and your family throughout the entire process.

Bariatric surgery is a safe and successful operation. It doesn’t mean that the patient has failed. It doesn’t mean the parents have failed. It doesn’t mean the provider has failed. It is an established treatment options for patients who need it and can really be a big benefit for them.

Surgery helps decrease complications that come with having obesity, and improves the quality and length of life.

Learn more about Surgical Weight Loss at Children’s Mercy or call 816-234-3199 to schedule a consultation.

When parents think about sports concussions, football immediately comes to mind. Some parents may argue whether kids should even play football because of the risk. But it’s not just football, concussions are relatively common in other contact sports (soccer, basketball, lacrosse, hockey and wrestling) as well. According to the Center for Disease Control and Prevention, 10 percent of all contact sport athletes sustain concussions yearly.

Who’s at Risk?

Sports concussions can happen at any age, from pee-wee to collegiate sports, and recreation leagues to competitive sports. Contact sports (football, soccer) have a higher risk than non-contact sports (tennis, volleyball). We know there is an increased risk for our young developing athletes when compared to adult athletes.

Female athletes also have an increased risk for concussion versus male counterparts when you compare them sport-to-sport, such as soccer to soccer, basketball to basketball and softball to baseball. We don’t know why this is the case, but it reiterates the need for further research as anyone can sustain a concussion while playing a sport.

How to Prevent Injuries

The first is to play by the rules of the sport and avoid head contact. Athletes are more likely to be injured during a game versus practice, especially during very competitive play. The data shows up to 25 percent of athletes are injured when not following the rules. That’s why there’s been a recent focus on rule changes in football and soccer to limit head injuries and make contact sports safer.

Second, student athletes should wear equipment that fits appropriately. That means football players should wear a helmet that fits. If it’s too big it increases the player’s risk for a concussion.

Currently, there isn’t any protective headgear or a mouthpiece on the market that prevents concussions, but there are things athletes can do to lower the risks. However, there are ongoing studies to look at equipment that may help.

Signs of a Concussion

We’ve seen an increase in concussions because more education is provided to athletes, coaches, parents and medical personal to recognize the signs and symptoms of concussions. We’re also doing a better job removing athletes from competition with signs of a concussion and documenting their injury better.

Losing consciousness is often thought to be associated with concussions, but actually only happens to less than 10 percent of concussed athletes. Instead, symptoms typically are physical, emotional and cognitive. A concussion should be suspected in the presence of any one or more of the following:

Headache

“Pressure in head”

Neck pain

Nausea or vomiting

Dizziness

Blurred vision

Balance problems

Sensitivity to light

Symptoms frequently last two to four weeks and can also include:

Sensitivity to noise

Feeling slowed down

Feeling like “in a fog”

“Don’t feel right”

Difficulty concentrating or remembering

Fatigue or low energy

Confusion

Trouble falling and/or staying asleep

Drowsiness

If there’s any concern an athlete has a concussion, the athlete should be removed from play and not allowed to return until evaluated by a physician. A player should go to the emergency room immediately for repeated vomiting, worsening headache or slurred speech.

Recovery

If an athlete is diagnosed with a concussion, we recommend an active recovery to get back into a regular routine as quickly as possible, which includes a healthy sleep routine, attending school and even light exercise, as long as their symptoms are not getting worse. We recommend working with the school and following a return to learn protocol or progression of getting back into school.

With an active rehab, the average recovery time is 3-4 weeks. Once asymptomatic, we recommend a return to play protocol.

Return to Play Protocol

Step 1: Light aerobic exercise for 20 minutes (stationary cycling/brisk walking) to increase heart rate. If there are not return of symptoms after 24 hours, athlete can proceed to Step 2.

Step 2: Sport-specific moderate exercise for 20 minutes (skating in hockey/running in soccer). If there are not return of symptoms after 24 hours, athlete can proceed to Step 3.

Step 3: Non-contact drills (shooting, dribbling, etc.) and may start lifting weights. If there are not return of symptoms after 24 hours and cleared by a physician, athlete can proceed to Step 4.

Step 4: return to full-contact practice. If there are not return of symptoms after 24 hours, athlete can proceed to Step 5.

Step 5: Return to full competition or game play. If the athlete has any future symptoms or concerns, remove from play immediately until evaluated by a physician.

If concussion symptoms return during any step, the athlete should rest for 24 hours. After resting and asymptomatic, start the protocol again with the previous step.

Questions Parents Should Ask

Before playing a contact sport, parents should ask these questions.

Does the school provide academic support, education to their teachers on concussion or offer baseline neurocognitive testing?

As part of the recovery, the school should be an active participant in helping the athlete return to the classroom effectively. This can happen with the use of academic support as well as with education of administrators, nursing staff and teachers. A baseline test is a computerized assessment that measures reaction time, memory and speed of mental processing. If a student is injured, the same test is administered to compare to the baseline in order to monitor the subtle deficits in the way the athlete thinks and processes information.

Is there an athletic trainer on staff?

Ask if there is a certified athletic trainer on staff and if that athletic trainer covers both games and practices. Athletic trainers play a vital role in helping diagnose and manage concussions, getting the athlete back on the field as safe and effectively as possible.

Have the coaches participated in concussion education?

Education is key. What resources do the coaches have, are they teaching players proper techniques to avoid injury, and confirming athletes are wearing equipment appropriately.

What is the concussion protocol?

Who is responsible for recognizing concussions during practice and games, and what is the plan if a player has a concussion.

For the most part, contact sports are relatively safe and the benefit of playing sports is much greater than the potential risk of having a concussion or getting injured. Having the proper equipment, playing fair and asking the right questions will help protect athletes so they can continue playing the sports they love.

]]>Sportsmed,Our StoriesWed, 29 Aug 2018 20:31:16 +0200https://content.presspage.com/uploads/1483/500_contactsports.jpg?10000Ragweed Allergy Season: New App Designed to Help Allergy Sufferers http://news.childrensmercy.org/ragweed-allergy-season-new-app-designed-to-help-allergy-sufferers/
http://news.childrensmercy.org/ragweed-allergy-season-new-app-designed-to-help-allergy-sufferers/Fall allergy season is here and there’s a new app that shows when the pollen count is high to help people treat symptoms more effectively.

It’s called the AccuPollen™ Allergy Tracker and it correlate allergies with the local pollen count, which provides specific breakdown of types of trees, grasses and weeds.

Children’s Mercy is certified by the National Allergy Bureau (NAB) and has been collecting pollen count data daily for more than 20 years, which is provided to the community.

“Since we already provide the data to the NAB, we were asked if we’d also provide the data for this app, which was developed by an allergist-immunologist in the NAB network,” said Kevin Kennedy, Director of the Environmental Health Program at Children’s Mercy. “We’re one of a whole network of pollen counting stations around the world, but we’re the only reporting station in the Kansas City area.”

Allergy Symptoms

One in five people have allergies, which can cause sneezing, runny nose, stuffy nose, itchy nose and watery itchy eyes.

“These symptoms occur when someone is allergic to a specific plant pollen that has been released in the air,” said Dr. Jay Portnoy, Pediatric Allergist at Children’s Mercy. “Right now, we’re headed into weed pollen season, which is mostly ragweed in the Midwest.”

Minati Dhar, a researcher at Children’s Mercy, collects pollen counts from a machine located on the roof of the hospital daily. She’s started seeing ragweed in the sample a couple of weeks ago.

“Ragweed allergy season usually starts in the middle of August and lasts until October,” said Dhar. “Tree pollen season starts in the spring around February or March and lasts until around May, while grass pollen starts in May and weed pollen starts in late May or June.”

While one season isn’t worse than the other (it really depends on what type of pollen a person is allergic to), this time of year seems to be particularly bad, especially for youngsters.

“Ragweed allergy season hits right when kids are headed back to school. They’re getting colds, nasal allergies or a combo of the two, which can make kids really sick and cause asthma to flare up along with nasal allergies,” said Dr. Portnoy.

Why Pollen Count Matters

Kevin Kennedy and Minati Dhar Dr. Jay Portnoy

Unfortunately, the pollen season isn’t easy to predict.

“The length and severity of the pollen season depends, in part, on the weather. If it's really hot and dry, pollination stops. If it rains, the pollen count will go down. If it thunderstorms and rains a lot, it can stir up the tree pollen in the ground. Even if the pollen is dead, it still has allergens and can cause allergy symptoms,” Dhar added.

Since pollen count can frequently change, the AccuPollen app provides real pollen count information on a daily basis, opposed to other pollen reports that are based on computer models.

“The strength of the app is its accuracy,” said Kennedy. “The idea behind tracking daily pollen count lets allergy sufferers know if a particular pollen is low or high for that day.”

Dr. Portnoy added. “The benefit is that someone with allergies doesn’t necessarily need to start taking medication until the pollen count goes up. They can then take it through the season until the count drops down and discontinue using it. There's pretty good evidence that shows people can control their symptoms by doing this and they end up taking less medicine, because they're not taking it when there isn't any pollen in the air.”

Finding Relief

When possible, allergy sufferers should limit exposure by not going outside when the ragweed pollen count tends to peak between noon and 2 p.m. The best time for outdoor activities is early in the morning or late in the evening. As for medications, over-the-counter antihistamines can provide relief.

“Zyrtec, Claritin, Allegra and Flonase all work well,” said Dr. Portnoy. “I recommend avoiding Benadryl because it can make children drowsy. Also, generic brands are just as effective as the brand names.”

If an antihistamine, nasal spray and eye drops don’t provide adequate relief or if symptoms last all year long then it might be a good time to see an allergist.

“Allergy specialists can confirm if you have allergies and what individual plants you’re allergic to,” said Dr. Portnoy.

It’s no secret this country is faced with an opioid epidemic. According to the National Institute on Drug Abuse, more than 115 people in the United States die every day after overdosing on opioids. An estimated 40 percent of those deaths involve a prescription opioid.

Hydrocodone in combination with acetaminophen is the most prescribed drug in the United States, and the top prescribers of opioids are primary care providers, internists, dentists and orthopaedists.

As a pediatric orthopaedic surgeon, we often prescribe pain medication post-surgery. Here’s what parents need to know about opioids and addiction.

Surgery and Addiction

It’s really unusual for patients to have an opioid addiction related to surgery, because pain medication is only prescribed for a couple of weeks after the procedure and dependence takes several weeks.

The bigger problem with addiction is when medication is overprescribed, which can be abused later. For instance, a patient may be prescribed a month’s worth of medication, but only need a week’s worth. Instead of leftover narcotics being properly disposed of, the prescription sits in the medicine cabinet. In my experience, parents typically don’t want to get rid of it in case they may need it later on.

The problem begins when this now 10-year-old becomes a 15-year-old and the prescription is still available. If the child has a propensity to addiction or hangs out with the wrong group of friends, then that prescription can get in the wrong hands. It’s been documented that 80 percent of high school seniors who reported using opioids recreationally used leftover medication from a legitimate prescription.

Monitoring Medications

Narcotics should be stored in a safe and secure place such as a locked cabinet, drawer or box to prevent young children from coming in contact with the prescription and accidently ingesting it, and to reduce teen access to prescription medications.

Parents should also keep track of medications known to be addictive and should be concerned if narcotics are missing from the medicine cabinet. Know where the medication is at all times and keep a count of how many pills are in the bottle.

The best advice to parents is to properly dispose of any leftover medications and as physicians we need to do our part as well.

Prescribing the Right Dose

It’s our responsibility to understand how many pills a patient really needs to recover from a certain condition after surgery or if there are alternative ways to relieve pain without opioids.

When I started out in my career, physicians had no idea how much to prescribe, so patients would receive the maximum amount so they wouldn’t run out. Now the focus is to prescribe only the amount a patient truly needs and help find better ways to manage pain after surgery, but it’s a fine balance. The last thing a physician wants to see is a child suffering after surgery. When a patient goes home, they shouldn’t have to come back to the Emergency Room because they’re hurting.

One way to help ensure that is for a quicker and efficient surgery, so there’s less bleeding and resuscitation, and the patient can recover much faster and easier.

Physicians also need to explore whether narcotics are necessary. For instance, studies show once a fracture is stabilized, the internal pressure starts to go down immediately. That helps pain relief because the tissue isn't swelling anymore. We've can also inject pain medication directly into the joint as well, so by the time that wears off the child is on his way to feeling better.

Better Pain Management

Narcotics aren’t always the answer. There are other ways to make sure your child is comfortable after surgery. I’m a big believer in getting a child’s circadian rhythm or sleep cycle back on track. That’s why it’s important to get kids out of the ICU and up to a floor with windows, so the child is exposed to regular day and night light patterns, which helps regulate the body.

It’s also important for the child to get back to a “normal” lifestyle as soon as possible, so the body functions naturally again. That means going to bed on time, eating nutritious meals and snacks, and drinking plenty of fluids.

There are several others ways you can help your child manage the pain in lieu of pain medications, which includes exercise, massage, heat, ice, relaxation techniques, deep breathing and getting plenty of rest. Distractions are also important, so you’ll want family and friends to visit when it’s appropriate. One of the reasons we do early discharge is to get kids home and outside, so they can start feeling whole again.

Finding the Balance

In the end, the goal is to give the child enough medication to treat the pain, but not over medicate. So the narcotics become a smaller part of the equation.

It will take all of us to help stop the current opioid-related public health emergency. As pediatric orthopaedists we need to manage opioid dosing in a responsible manner and encourage patients to use non-opioid and non-pharmacologic modalities to decrease pain.

]]>Pediatric Surgery,Our Experts,Our StoriesTue, 21 Aug 2018 15:14:55 +0200https://content.presspage.com/uploads/1483/500_opioid.jpg?10000Breakfast is an Important Meal http://news.childrensmercy.org/breakfast-is-an-important-meal/
http://news.childrensmercy.org/breakfast-is-an-important-meal/With kids heading back to school, we know mornings can be chaotic trying to get everyone up, ready and out the door on time. It’s important though to make sure they are starting the day right by fueling their body for the day with a healthy breakfast.

Kids who eat breakfast are more likely to:

Have more energy.

Work faster, make fewer mistakes, be more creative and even score higher on tests.

Most childhood injuries can be prevented, and knowing how to prevent an accident is key to keeping children safe.

We’ve all been taught the basics. Buckle-up in the car, wear a bike helmet and look both ways before crossing the road. But there are several other simple things you can do (some you might not have heard of before) that can protect you and your family.

Motor Vehicle Accidents

According to the Centers for Disease Control and Prevention (CDC), one of the leading causes of death for children is car accidents. In most cases, the child was not properly restrained. Studies have shown 80 percent of car seats are used incorrectly, which increases the chance of a child being seriously injured or killed in a crash.

To help prevent injuries, make sure the child is in the right type of seat per age and weight, and that it’s properly restrained in the correct location of the car. Each car seat is different, so follow the manufacture guidelines and how it should be properly installed.

Here are some other important thing to remember about car seat safety:

The base of the car seat shouldn't move an inch in any direction.

Car seats can be secured either by a LACTH system or seat belts. Both are safe. However, read the car owner's manual. SUV’s have several hooks, but a lot of them aren't made for car seat anchors and may not have the durability to hold up in a crash.

A lot of car seats get handed down from family members and friends, never use a car seat that's been in a crash, and check for recalls and an expiration date.

4’9” Booster Time! A child who is about age 4 to age 8, and under 4'9" tall, and who has outgrown a forward-facing child safety seat should use a booster seat with a lap-shoulder belt.

All children age 12 and under should always ride in the back seat.

Falls

Falls are the leading cause of non-fatal injuries for children. According to the CDC, almost 2.8 million kids are treated in U.S. emergency rooms each year for fall-related injuries.

While falls on the playground are the most common, they can happen anywhere. Here are a few safety tips to help protect children whether outside or at home.

Playground equipment should be surrounded by soft landing material such as mulch, wood chips, pea gravel or a rubber safety surface.

Children should wear protective gear during sports and a helmet while riding a bike.

Avoid baskets on the front of bikes or overloading backpacks, which can throw off a child’s balance.

Use non-slip decals or a mat in the bathtub and a non-skid rug on the bathroom floor.

Install sturdy handrails on both sides of the stairway and keep stairs clutter free.

For infants, use the safety belt on highchairs and changing tables.

Make sure all cribs, changing tables, playpens and beds are placed away from windows.

Secure heavy and/or tall furniture to the wall, so it doesn’t tip over and fall on the child.

Pedestrian Accidents (Walking and Biking)

Pedestrian accidents are on the rise as more drivers become distracted by smartphones. The most common reason children are hit by cars is because kids will dart into the street without looking and drivers simply don’t see them or they can’t stop in time.

Parents often think children are able to cross the street by themselves before they are ready, but really kids don't have the necessary skills until at least age 10. Younger kids often run across the street without looking both ways. If you think a child is safe to cross the street, BE WARY, children forget safety lessons during moments of fun and excitement.

Here are some other tips, especially as kids head back to school.

Walk the child’s route to school and make sure there’s a sidewalk the entire way.

Make sure the sidewalk is in good condition. Children tend to walk or ride bikes in the road if the sidewalk is bumpy and they’re worried about falling.

Children should always use the crosswalk if there is one.

Make sure children take five giant steps away from the road while waiting for the school bus and avoid rough play.

Teach children to ask the bus driver for help if something is dropped near the bus. If a child tries to pick up the item the driver may not see him or her and the child could be hit by the bus.

Teach children not to assume a driver sees them when they’re getting ready to cross the street. (Drivers should also keep in mind kids are often distracted and shouldn’t assume that a child see them either.)

Kids should look both ways before crossing the street even when a crossing guard is present.

Fire and Burns

Every day, more than 300 children are treated in emergency rooms for burn-related injuries and two children die as a result of being burned.

According to the CDC, younger children are more likely to sustain injuries from scald burns, such as hot liquid or steam, while older children are more likely to sustain injuries from direct contact with flames.

There are several things you can do to protect your child from being injured due to fire and burns.

Check smoke detectors monthly, change batteries twice each year and replace smoke detectors every ten years.

Have a plan in case of a fire and practice the plan once a month, which includes a meeting place outside.

Store chemicals properly and keep flammable liquids out of reach.

Don’t overload electrical sockets, which can contribute to a house fire.

Unused outlets should have electrical covers, so kids can’t stick anything in it and get electrocuted.

Children should not be near hot stoves and position pot handles away from the edge, which can be easily grabbed.

Test heated foods, especially those warmed in a microwave, before giving to a child.

The hot water heater should be set at less than a 125 degrees. Use a candy or BBQ thermometer to check the water temperature by running the water over the thermometer for 3-5 minutes.

Make sure the bath water isn’t too hot. Use a baby bath thermometer.

Safe Sleep

Sudden Infant Death Syndrome (SIDS) is the leading cause of death among babies between one month and one year of age. A new study shows a baby's risk of death from being placed in an unsafe sleeping position or location is higher when they're under the care of a baby sitter, relative or friend. It’s important for parents to practice and share these safe sleeping tips with anyone watching their child to help lower the risk of SIDS and accidental suffocation.

Always place baby to sleep on his or her back at naptime and at night.

Remove all soft bedding and toys from the baby’s sleep area.

The American Academy of Pediatrics suggests using a wearable blanket or sleep sack instead of loose blankets in the bed.

Never dress the baby too warmly for sleep and keep room temperature at 68-72 degrees Fahrenheit.

Remove crib bumper pads when the child can “pull to stand.”

The crib mattress is firm and fits snugly without gaps.

The space between the crib slats is no more than 2-3/8 inches apart (approximately 203 finger widths).

]]>Child Development & Safety,Our StoriesMon, 13 Aug 2018 17:02:00 +0200https://content.presspage.com/uploads/1483/500_girlwearingbikehelmet.jpg?100004 Ways to Reduce Risk of ACL Injuryhttp://news.childrensmercy.org/4-ways-to-reduce-risk-of-acl-injury/
http://news.childrensmercy.org/4-ways-to-reduce-risk-of-acl-injury/An ACL injury can be devastating for a student athlete. The clinicians at the Sports Medicine Center at Children’s Mercy are dedicated to helping reduce the risk of ACL injury with these recommendations:

Play multiple sports. Participating in multiple sports throughout the year can develop and fine-tune your child’s athletic skills. A soccer player, for example, could develop speed and quickness by running track. Or, could improve foot speed and coordination by playing tennis. But if your child specializes in a sport, he or she may overuse their body by repeating the same movement patterns. This could possibly result in injury.

Rest! When adolescents are tired, their bodies don’t perform the way they should and movement technique often gets sloppy, resulting in injury risk. Adequate sleep, rest days, and alternating hard workouts with easier workouts are all important strategies to reduce your child’s risk of injury and make them a strong, injury-free athlete.

Training must strengthen and stretch key muscle groups. Injury reduction is possible if the adolescent has optimal flexibility through the legs, strength of the hips and core and balance, allowing the child to jump and land safely.

When a student athlete gets injured it can turn their world upside down and impact their emotional state. In our society, there’s an expectation that athletes need to be strong and hide emotion. That they need to play through pain, whether physical or mental. These athletes face other stressors too, which include family and college expectation, especially if playing a sport is going to help pay for college.

Add this to the other common teenage growing pains and it can be overwhelming. Injured athletes are not only at risk for depression, but suicidal thoughts, and parents, coaches and teachers need to know the warning signs.

Injury and Isolation

Suicide is the second leading cause of death for young people. We're losing more youth to suicide than cancer. It’s not just a problem on the national level, it’s a problem right here in our own backyard. Both Kansas and Missouri have higher suicide rates than the national average.

Studies show that social isolation increases the likelihood of suicidal thought and self-harm among adolescents. When athletes are sidelined they often become isolated from their peers, and the longer they’re away from normal activities the more isolated their world becomes. They may stop talking and texting with their teammates because they’re no longer part of the everyday moments. They could feel excluded and the entire dynamic changes.

To maintain a connection with their peers, I encourage my patients to go to practice or manage the team even when they’re not playing. Having a routine and participating in daily activities with their teammates will help their overall mental health.

Suicide Warning Signs

So how do you know if someone is having suicidal thoughts? There’s a misperception you can tell just by looking at them. That’s simply not true. There’s not a “look,” but there are risk factors, which include the following:

Withdrawn or feeling isolated

Poor grooming

Appetite/eating changes

Failing grades

Discord with friends/parents

Victim of bullying

Frequent stomach/head complaints

Sexual identity issues

Gender identity issues

Cutting back on activities

Reckless behavior

Substance abuse

Shutting down

Genetic predisposition to mental health problems

Previous suicide attempt

It’s not unusual for teenagers to display a couple of these behaviors from time-to-time, but you need to be concerned if they have several of these risk factors at once.

What to Do

Teenagers often don’t want to talk to their parents when there’s a problem and instead may turn to a coach, teacher or another trusted adult for help. If someone confides in you, first make it clear you’re not in a hurry and thank them for sharing.

The first step in suicide prevention is identifying if the person needs help, and the severity and immediacy of that risk. You can do that by asking three questions.

Have you wished you weren’t alive anymore?

Have you had thoughts about killing yourself?

Have you ever done anything to try to kill yourself?

If they share specific thoughts, plans or actions you need to take action right away. Some teenagers may have vague thoughts about giving up from time-to-time, and they may not have any plans to harm themselves. Even so, it’s important to address this concern because it could progress to something more serious. If you talk to someone with a specific plan for suicide, especially if they have access to whatever is necessary to carry out the attempt, this is an emergency.

Always encourage that person to seek help and let them know you’ll need to tell their parents. The parents have a right to know and you should never keep thoughts of suicide confidential.

If your child is at risk for suicide, get them into counseling or take them to the emergency room if there’s a more immediate concern. Make sure make sure weapons are out-of-sight and locked up. Assure that your child doesn’t have access to prescriptions and over-the-counter medications such as Tylenol, Ibuprofen and Benadryl, as these medications can be just as dangerous as prescription medications.

Adolescence is a time of tremendous change, and impulsive decisions can have serious consequences. We need to remember that it takes a strong person to acknowledge that they need help, and we need our athletes to know it’s important to accept help when offered. The vast majority of people who face suicidal thoughts recover. We need to expand our focus, not only on how to identify those at risk, but on how recovery is possible. Many amazing athletes at one time faced tremendous struggles, and yet they got help and went on to thrive. We need our patients and families to know that recovery from mental health conditions is possible.

Note:If your child or someone you know is exhibiting signs of depression or suicide, if they are struggling with difficult thoughts and feelings, there is help available. Children’s Mercy social workers are available to connect you with services in your area. Need to talk to someone? Call (800) 273-TALK (8255). The Lifeline is available 24 hours a day, 7 days a week – and is free and confidential.

]]>Sportsmed,Child Development & Safety,Our StoriesMon, 06 Aug 2018 15:58:24 +0200https://content.presspage.com/uploads/1483/500_teamcelebration.jpg?10000Telemedicine: Extending the Delivery of Health Carehttp://news.childrensmercy.org/telemedicine-extending-the-delivery-of-health-care/
http://news.childrensmercy.org/telemedicine-extending-the-delivery-of-health-care/Telemedicine has moved well beyond novelty status. The American Telemedicine Association describes telemedicine as, “a significant and rapidly growing component of health care in the United States,” with more than 200 telemedicine networks and 3,500 service sites in the country. Over half of U.S. hospitals now use some form of telemedicine.

The Children’s Mercy Telemedicine program has participated in this growth, both in terms of services delivered and as a recognized industry leader.

“In fewer than six years, Children’s Mercy has grown from one telemedicine patient to over 2,300 virtual patient encounters in the recently ended fiscal year 2018,” said Morgan Waller, MBA, BAPsych, BSN, RN, Director of Telemedicine Business & Operations.

Morgan also cited several other areas of Telemedicine growth at Children's Mercy, which includes:

Expanding from one to four Outreach Centers: St. Joseph; Joplin; Wichita; and Junction City, plus KidCare Anywhere, a direct-to-consumer virtual health service that offers access to providers via smartphone, tablet or computer.

Providers from 31 specialties offer services via Telemedicine, and the program aspires to include all 40-plus Children's Mercy specialties.

Language services may be accessed through telemedicine technology to support in-person or virtual encounters.

Advances in technology. “It’s better, faster and easier to use,” Morgan said. “The technology is developing so rapidly that we hardly ever have connectivity issues. We’re now able to deliver services to patients in their homes on their cell phones. That was just a dream five years ago.”

This growth and success were made possible by the most important of reasons: the quality the program delivers (which Morgan attributes to all members of the Telemedicine Team); and the adoption by providers, patients and families. Feedback from satisfaction surveys is more than 98 percent positive. Here are some examples:

“It was very easy and still comprehensive. The technology was great. [The provider] was able to listen to her breath sounds and heartbeat via stethoscope and zoom in on her PICC line.”

“Feels personal even though it’s through a screen; very convenient.”

“With this new technology it really feels like you’re there with the doctor.”

“In this area of the country, it is vital to provide comprehensive care without burdening the family,” said Dr. Singh, who recently was recognized by InTouch Health for the largest number of pediatric specialty visits. “Telemedicine provides the opportunity to help in the best way we can. The technology is very reliable. I can provide the same type of care compared to if the patient and their family were face-to-face with me in clinic.”

Dr. Malloy-Walton said, “Telemedicine is a great way to make care more convenient for our patients, getting rid of extra time and distance spent traveling. Telemedicine has advanced so much over the years and the technology is amazing. It’s the wave of the future for medicine in pediatrics.”

Success story

One of telemedicine’s best success stories involved KidCare Anywhere (KCA), Children's Mercy direct-to-patient telemedicine platform used by Children's Mercy Integrated Care Solutions for our managed-care population. (The service is available from 5 p.m. to 10 p.m., 365 days a year for minor medical needs.)

Recently, a KCA provider was caring for a patient in the patient’s home when the parents had questions about the schedule and doses of medication the child takes routinely. The child, who also is followed by Endocrine, takes the medicine for a chronic specialty condition. The medication is out of KCA’s minor medical scope, but because of our providers’ support of new and better processes, the KCA physician paged the on-call Endocrinologist for direction. The Endocrinologist was familiar with the condition, both providers had access to the patient’s medical history via the electronic health record, and the parents’ questions regarding how to proceed with their child’s medication were answered. The entire interaction required less than 20 minutes of the parents’ and provider’s time, and no time was lost to a commute.

“This is an ideal example of the quality and efficiencies a health care organization can achieve when it embraces telemedicine to connect care for patients and families at the right time and right location,” Morgan said.

“Telemedicine is fast becoming part of how health care is delivered. It is no longer considered novel,” she added, “Telemedicine is an important strategic initiative for our hospital because it improves access to our services; enhances outreach efficiency and quality; and is more convenient for patients, families and providers.”

]]>Research & Innovation,Our StoriesWed, 01 Aug 2018 15:45:16 +0200https://content.presspage.com/uploads/1483/500_telemedicine-18.jpg?10000Double Balloon Enteroscopy Makes Big Difference in Teen's Carehttp://news.childrensmercy.org/double-balloon-enteroscopy-makes-big-difference-in-teens-care/
http://news.childrensmercy.org/double-balloon-enteroscopy-makes-big-difference-in-teens-care/Except for some unusual bluish pigmented spots around his mouth and lips, Toby Nguyen seemed like a healthy child until age 6. That was when the Warrensburg boy began experiencing excruciating stomach pain and vomiting every time he tried to eat.

“Toby couldn’t keep anything down,” said his mother, Sarah Nguyen. He lost 15 pounds and eventually was put on a liquid diet and feeding tube. Unfortunately, even that didn’t solve the problem.

As his condition worsened, Toby was referred to a gastroenterologist in another city where he was treated for cyclical vomiting syndrome.

“His symptoms were being treated, but not the cause,” Sarah explained. After a number of hospitalizations, Toby was diagnosed with a small bowel obstruction, then underwent emergency surgery to remove it, along with several polyps.

That was when genetic testing confirmed Toby has Peutz-Jeghers syndrome, a rare genetic condition caused by a mutation in the STK11 gene. An earmark of the condition is small, dark-colored spots on the lips, around the inside of the mouth and near the eyes and nostrils, spots like Toby has.

“Peutz-Jeghers is so rare, even though we asked about the spots when Toby was a baby, I don’t think anyone knew at that time what caused the pigmentation,” Sarah said.

Normally, the STK11 gene prevents cells from growing and dividing rapidly, acting as a tumor suppressor. But the mutation Toby has can cause multiple polyps to form in the stomach and intestines during childhood or adolescence.

In turn, the polyps can cause frequent bowel obstructions, chronic bleeding and abdominal pain. Peutz- Jeghers also increases the lifetime risk of developing malignancies of the gastrointestinal tract, lungs and pancreas. Though the problem can be inherited, no one else in the Nguyen family has been affected.

Double Balloon Enteroscopy—The Gold Standard of Care

Once Toby was diagnosed, Sarah said they began searching for an expert in the condition, traveling out of state for ongoing care until 2012 when Children’s Mercy started the Polyposis Center.

“We were thrilled,” Sarah said. ““We are the type of people who will drive 10 hours to find the right help for our child. But it’s much easier to drive an hour and know that Children’s Mercy can take great care of him, and we need a lot of care!”

Toby is monitored every six months with capsule endoscopy for polyp development, and every year he needs an endoscopy, colonoscopy and a double balloon enteroscopy.

A veteran of three surgeries to remove abdominal obstructions, it’s double balloon enteroscopy, or DBE, that’s made the biggest difference in the teen’s care recently. DBE is a procedure that’s available at Children’s Mercy and just a handful of hospitals nationwide,

“Toby mentioned that he was having some abdominal pain,” Sarah said. “Over the years we’ve learned that could mean he’s developing an obstruction.”

“I tried to ignore the pain and just live a normal life,” the 15-year-old said, “but I am glad that Dr. Attard is diligent and was able to take care of this quickly.”

“Traditional CT scans, MRI studies and capsule enteroscopy allow you to visualize the upper and lower gastrointestinal tract. They don’t help us look at the 17 feet of small intestine in the middle, but DBE does. That’s where Toby often has a problem,” Dr. Attard explained.

DBE involves the physician utilizing a series of balloons to anchor the scope while slowly advancing it through the small intestine in a caterpillar-like fashion. Performing the test is labor intensive and requires a highly skilled operator, another reason many pediatric hospitals don’t offer it.

In addition to patients with Peutz-Jeghers, DBE is used to diagnose and treat patients with inflammatory bowel disease, and gastrointestinal conditions that could not be diagnosed using traditional testing.

“These studies can take as long as five hours to perform,” Dr. Attard said. “Double balloon enteroscopy is the gold standard of care for patients like Toby. With it, we can intervene to take a biopsy or remove a polyp,” said Dr. Attard. “DBE can help us avoid open surgery for these patients.”

And that’s exactly what happened.

“Toby did have a large polyp causing an obstruction, but Dr. Attard was able to use DBE to remove it. He went home the very same day. Compared to surgery and a three-week recovery, it really is remarkable!” Sarah said.

Going forward, Toby will continue to need screenings every six to 12 months to monitor for polyp development and potential malignancies.

“We know these patients are at risk, so we strive to create a plan that includes long-term surveillance to detect a problem before it develops. That way, kids like Toby can live a normal life.”

Sarah said that’s just what Children’s Mercy is helping her son do. Toby will graduate high school next year and head off to college early where he plans to major in mathematics. When he’s not in the classroom, he’s practicing classical piano at least an hour every day, usually Chopin.

“The screenings and procedures they do at Children’s Mercy mean we don’t have to live in fear that Toby will have to have to have surgery. We know they have the capability of doing DBE and removing these obstructions before they become severe,” Sarah said.

“We have a lot of experience with hospitals and you can’t ask for anything better than that. You really can’t. I feel very lucky we live so close to Children’s Mercy.”

When kids visit the Children’s Mercy Northland Urgent Care and are admitted for in-patient stays, they each receive a pillowcase made by staff volunteers.

“Our hope is these pillowcases bring patients comfort as they go to the hospital. Many of our families aren’t expecting to be admitted and it can be a scary time,” says Traci Burns, RN, BSN, who started the philanthropy project. “Our team is more like family. Everyone has giving hearts and we want our patient experience to be the best it can be.”

Burns’ daughter, Lauren, had knee surgery at Children’s Mercy when she was 8 years old. Lauren decorated a pillowcase with Child Life that still sits on her bed at her parents’ house and brings a smile to her face when she visits home. She’s now 26 years old.

That pillowcase was a treasured memento, and provided the spark for this idea which Burns is spearheading. About a dozen volunteers have met three times over the past few months to work and sew. They have completed 47 pillowcases and have 30 more in progress.

“It’s pretty remarkable that these volunteers are meeting on their own time outside of work. We meet at 9 a.m., so some staff volunteer for two hours before their shift starts or some even come in on their day off. I think that says a lot about this group,” Burns says. “We have experienced seamstresses and people who have never sewn. There are many jobs to do besides sewing, like pinning fabric together and lots of ironing!”

]]>Our StoriesWed, 25 Jul 2018 17:36:35 +0200https://content.presspage.com/uploads/1483/500_pillowcase-northland.jpg?10000Children's Mercy Joplin Opens New Locationhttp://news.childrensmercy.org/childrens-mercy-joplin-opens-new-location/
http://news.childrensmercy.org/childrens-mercy-joplin-opens-new-location/The new location for Children’s Mercy Joplin is now open. The first patients were seen in the new clinic space last week.

“We are very excited to open this new, much larger location for Children’s Mercy Joplin,” said Marshaun Butler, Vice President, Children’s Mercy Hospital Kansas, Outreach & Regional Practices. “In the four years since Children’s Mercy first opened a dedicated clinic in Joplin we have continued to add services and we quickly outgrew our old space.”

The new location has double the number of exam rooms, a larger waiting area, more parking with direct access to the building, point of care lab and additional work space for staff.

“We know there is a demand for our services in Joplin. For almost 25 years our specialists have traveled to southwest Missouri/southeast Kansas to provide convenient appointments to local children,” Marshaun said. “This expansion allows us to increase our clinic capacity to better serve these patients and families.”

While the clinic has moved off of the Freeman Health System campus, Children’s Mercy will continue its strong working relationship and affiliation with Freeman.

The new clinic address and contact information is:

1801 W. 32nd St. - Building AJoplin, MO 64804

Phone: (417) 578-2200

Fax: (816) 302-9651

Below is a comprehensive list of the current services being offered in Joplin.